posted
My daughter was tested through Biotek Labs for her immune system's response to certain foods.
At this morning's appointment, the LLMD gave my daughter the news-she is to stop eating bananas, peanuts, pineapples, bluberries, soybeans, spelt(?), wheat, sugar cane, ALL GLIADIN (whatever that is), milk, and ALL GLUTEN.
Carolyn is 16. She lives on pizza, candy, and cereal with milk-,Slim Fast, and Taco Bell. She is not a happy camper.
Now she thinks the LLMD is a quack and we should stop wasting her time and my money on going to see her!
Carolyn's follow up appointment is Oct. 31st-she is the type of kid, even at 16, who will dress up like a hobo , carry a pillowcase through the neighborhood to collect candy, and then come home and hide it (after turning over all coconut to me), so no one else will pillage her spoils.
After the appointment I dropped her off at school. I bet she feels like it's the end of the world.
I told her I would do some research on leaky gut and BioTek Labs.
Would love anybody's input, or as I said, opinion on this.
posted
IMO - Call LLMD and ask that you start this a little later (like after halloween) (downside....the holidays are just around the corner...YUMMMMMY)
Part of her recovery also depends on her attitude.
Question? How long do you have to wait to get an appointment to see her LLMD?
Sorry if this seems a little whacked - but I remem ber being a kid - and a unior in high school also dressing up and hitting the houses for candy
Your only a kid once...right?
BTW - send some of that coconut this way please!
-------------------- Those who say it can't be done, should get out of the way of those who are doing it! Posts: 34 | From South Dakota | Registered: Sep 2007
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Cobweb
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*****Question? How long do you have to wait to get an appointment to see her LLMD?*****
We were at the LLMD's this morning-getting the results of the testing. Carolyn's next appointment is scheduled for Oct 31st to see if she has made any progress following the new diet.
LLMD gave us the website for celiac disease-which I already had from Lymetootoot.
I'm thinking I may tell Carolyn if she's really really good this month , she can go to her next appointment with a clear conscience and a cleansed gut- and then....
Have a blow out Halloween Night. She'll probably get sick as a dog. But then jump back on the bandwagon before her next appointment in Nov.
Speaking of blowouts-I immediately and automatically roll down all four windows when Carolyn lets one loose in the car. She just sits back there and laughs.
I had Carolyn check off all her favorite foods on the allowable list of foods and plan to stock up for her meanwhile.
I wonder where Stevia fits into this?????
Doctor was very serious about all this-really had quite a doom and gloom prognosis about how much worse Carolyn was going to get if she did not comply.
I did research BioTek and didn't see anything shady about the lab. Looks to be all legit.
Silly me. I was almost hoping to find out it was a rogue lab and pay the results no mind. Not the case however, so I guess this is the real deal.
Oh my, poor baby. I did tell her I would only eat what she was allowed to eat ,too. Although I do love raw oysters, and that's on her no no list,too.
posted
I had a similar test 6 yrs ago which I basically ignored! It finally hit the fan last year, when my celiac problems came on full force.****
Then I remembered that test, dug it out and felt really STUPID! My celiac or gluten intolerance problems began 30 yrs ago....but a test came back negative for it.
I THOUGHT I had a wheat allergy....so I did stay away from wheat for years and years. But when things got really bad last year, I went off gluten and felt MUCH MUCH BETTER in one week!
You will have to read all labels. Check the list of OK foods and NOT-OK foods on that site.
****(I actually tried eliminating gluten, but didnt' have the understanding that I needed to have about checking all labels for HIDDEN gluten....)
I think it will be next to impossible for you to control what she eats if she is attending school. So she will HAVE TO BE on board with this.
I feel for ya!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cobweb
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Lymetutu- I have decided to respectful of your screen name since I am really going to need your help with this issue.
I just spent a good amount of time cruising the celiac.com site and actually felt like there may be hope for us to pull this off.
LLMD did stress the necessity of reading labels, but I have so much to learn, and figure out what to look out for. Hidden gluten????
Like-what does she put on her gluten free cereal? if she can't have cow or goat's milk or anything with whey?
I guess butter is a diary product? What fats can she eat?
Guess i'm just feling a little bit overwhelmed right now-but also excited that perhaps this will be the key to Carolyn feeling her best.
Cobby ps- Carolyn made the chilling comment when we left the office was "the only way I'm going to be able to follow that diet is to be anorexic"
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Aniek
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posted
Cobby,
I had an ELISA food sensitivity test from a different lab, that's no longer running tests. It was right on.
Some of the things it came back with gave me clear problems. Lemon makes me nauseous. Red leaf lettuce gives me very bad abdominal cramps. I was so much happier when I cut the foods out.
As for celiacs, there was a girl in my high school who had undiagnosed celiacs for years. Everybody thought she was anorexic in high school. She ended up institutionalized for depression during her college years.
They believe this was the result of undiagnosed celiacs. Your daughters life will change for the better if she has celiacs and changes her diet.
I know it's going to be hard. I would include your daughter in the menu creation as much as possible. See if she can come up with ideas and if you can come up with new comfort foods. Maybe you can come up with some dishes replacing pasta with rice.
You might also need to drop foods slowly, rather than all at once.
So you are aware, soy is really hard. I found I have a soy allergy recently and it's in absolutely everything. Ask the doctor if soy oil is ok. For most people with allergies, soy oil is ok because it does not contain the protein.
But anything that says "lecithin" could have soy lecithin in it. And any thing that says "vegetable oil" could have soy oil in it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Cobweb
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yeah- doc said no soy,
I thought of telling Carolyn she could go to the celiac.com website and tell me what she would like me to order for her.
Carolyn is going away on a long planned teen church retreat this weekend-so I am not going to ask her to be closely compliant until Monday.
At least she will have the next few days to process the whole deal. Fortunately there are some foods on the allowable list that she likes.
I was surprised to see bananas , blueberries and pineapple on her No No list-in fact they were three of the highest reactions.
And I always thought bananas were one of the perfect foods. The only thing on the vegetables list she can eat is spinach!
Peanuts were the highest NO NO. and chicken was on the don't eat list. What's up with chicken-I also thought that was a good food.
posted
I am on a strict diet for my leaky gut too. No dairy, wheat or sugar, no corn or peanuts. I think I still have some allergies that the doc has not picked up on, maybe I should take this test.
Anyway, that is going to be hard for a girl her age, but try to get creative with it. Maybe she can eat almond butter on brown rice toast, or nitrate free deli meats like ham and turkey. Also, one of my faves is tinkyada noodles with roasted bell papers and artichoke hearts, drizzled with grapeseed oil, and topped with sea salt. I know they make lost of gluten free foods that the health foods stores carry. If she is not adverse to sugar like I am, than it opens up the field even wider. Erewhorn makes a brown rice cereal that is pretty good, and I use vanilla rice milk.
I wish you luck....I am not looking forward to the holidays either. It takes a lot of discipline.
MMMM...if only I could have some chocolate:).
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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posted
Boy, she's worse off than me.....although I DON'T know if I'm sensitive to soy or milk .. I probably am.
I do try to avoid soy, as I feel it is NOT good for anyone. Milk has never been "my friend."
Yeah, give this some time to soak into her head for a bit, but let her know you're NOT going to forget about it or ignore this important piece of information.
After being on www.celiac.com I realized how many people there were finding out they also had LYME!
Gluten intolerance definitely can cause depression and other mental symptoms and I'm sure Carolyn would be glad to bypass those!
It will show you exactly why gluten is bad for all of us and why soy and milk are in the same category.
Good luck and PM me anytime!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
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posted
The forum at celiac.com is very helpful. Have her go there for support ... many, many people there have multiple food sensitivities ... several also have Lyme Disease.
For fats, use coconut oil and olive oil. You can also use ghee (clarified butter, fat only, doesn't have dairy protein).
She can't have the Taco Bell meat as it has wheat in it ... but you can make tacos at home. She can also use corn tortillas. You can also eat at Chipotle -- everything is gluten-free except for the tortillas (I get burrito bowls).
Kinnikinnick is good for bread, but needs to be toasted. Tinkyada is good for pasta, made from rice.
For most it's easiest to start with what you CAN eat -- meat, poultry, veggies, fruit, rice, potatoes, etc. Make a list of what she likes that she can eat and have lots of it.
I make fudge that I live on ... I don't know whether she can have all the stuff in it but here it is -- 1 cup cacao beans ground in coffee grinder, 2 cups almond butter, 8 tbsp. coconut oil, 1/8-1/4 cup agave syrup, 2 tsp. vanilla, 1/2 tsp. salt -- mix all ingredients with hand blender, freeze for 30 minutes, move to refrigerator.
On the bright side for you as a mother, she will be eating much healthier.
My food sensitivities have greatly diminished with Lyme treatment. So, once her leaky gut is healed, she may be able to add back in some of those foods ... but only if she cuts them out and heals her gut.
Is she being treated for Bart? I blame the Bart for my GI issues.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Cobweb
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Okay- Now I'm going to get REALLY MAD.
We have been going to the same Johns Hopkins pediatrician Carolyn's whole life-WHY DID IT TAKE AN LLMD to order these food reactive tests?
Sounds similiar to Dilly's despair.
The only diagnosis we got from JHU, after scores other tests, was "hmmmm, don't know what's going on-see a shrink"
I think I'll go pull my hair out- the one that's left.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Cobby,
The reason some healthy foods are on the list are because it is your daughter's personal reactions/sensitivities. There is a specific problem in her ability to handle that food.
If the test is the same test I got, it's not a generally recognized test. It's used by more alternative doctors, so JHU would never order it. But, as I said, I noticed reactions when I ate foods on the no list.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Cobweb
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I wish I could hang out and blow off steam all night long-but I have to go.
Anyway- I love the feedback that's coming in, the recipes, websites, etc. Depression is definitely one of her issues.
She's a fantastic kid- aren't they all!?!
BTW- corn is on her no no list- brown rice is okay. But the info about taco bell meat-how would I know that if you all didn't tell me????
Sh!t man-this is really messed up. But I am so happy and grateful to know, and have something to deal with that can and will be managed.
I have felt for a long time that this kid has been living a half-life if you know what I mean.
Back at you later. I love you all. We shall overcome. Carol
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sixgoofykids
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Carol, Taco Bell meat ... that's why you need to hang around celiac.com for a while! There are lots of surprises.
I'm one of the ones Lymetoo is referring to ... though I go by a different screen name there ... you never know who's going to be reading online, so two different screen names.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Cobweb
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quote:Originally posted by Aniek: Cobby,
The reason some healthy foods are on the list are because it is your daughter's personal reactions/sensitivities. There is a specific problem in her ability to handle that food.
If the test is the same test I got, it's not a generally recognized test. It's used by more alternative doctors, so JHU would never order it. But, as I said, I noticed reactions when I ate foods on the no list.
I specifically googled the lab and found nothing derogatory or suspicious or scam oriented. Not even one negative review or warning-from anyone.
It may not be a generally recognized test-as you pointed out-but the mainstream docs didn't even suggest their own version of testing for us to do.
I did take her today for a sugar test which her pediatrician did consent to order-but not until I insisted. i didn't even know there was this other type of food reactive test available.
Jerks,there all Jerks. I hearby rename JHH-Jerks Horrendous Hospital.
SFD Cobby I'm going for a walk to cool off before I develop a migraine.
posted
I'll save you some time on what seem to be the better tasting gluten free brands.
Pasta: Tinkyada, Tinkyada, Tinkyada! She won't notice the difference.
Breads: Glutino and Kinnickinnick have the best tasting breads and they are kept in the freezer section at the store. They're better toasted!
Cereals: Barbara's has some decent cereals.
Pretzels: Glutino's. Can't tell the difference!
Our whole family went gluten free about a year or so ago. The hardest part is eating out. We've found a few places that are good:
Greek/mediterranean places - kabob with rice, usually the only gluten will be if they give you pita bread.
Mexican - but get corn tortillas and watch for the enchilada sauce it's usually thickened with flour.
Chinese - We went to a local restaurant and the owner told us that none of the "white sauce" dishes have soy sauce in them. Chinese food basically is gluten free except for the soy sauce so you have to make sure that the meat hasn't been marinating in it or that it's been added to the stirfry sauce. We bought a bottle of gluten free soy sauce and take it with us and now they stir fry "brown sauce" dishes for us.
After we eliminated gluten if my daughter (16) accidentally ate gluten she realized that gluten did affect her. Before that she was just used to having stomach issues, they were a normal part of life for her. She also becomes very emotional when she has gluten now so it's a pretty strong incentive for her to stay away from it.
My son (12) occasionally has gluten at school but generally sticks to the diet.
Neither kid has Lyme but I guess one of the silver linings of my husband having Lyme is we found out about gluten sensitivity because of it.
Also, more and more people are finding out about gluten sensitiviy and celiac so there is more awareness and better products.
Do the best you can to make things gluten free at home and at this point don't stress if she's eating it when she's out. You don't want to get into a huge control issue about it. Keep gluten free as your goal and work toward it. You'll get there!
(Sorry, didn't see about the corn until I saw the later post - so forget the corn tortillas. Costco has been carrying some really tasty rice crackers by Cruchmaster. I would have bought these even before going gluten free! I'm not the only one that likes them - my daughter's dance team wiped out her supply!)
Posts: 984 | From San Diego | Registered: Nov 2006
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disturbedme
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posted
I don't know if I'll be of any help, but you were asking earlier on what your daughter could put on her cereal if she can't put milk (dairy) on it.
Obviously, soy is out. But there are all types of milks now. I'm vegan, so I usually drink soy milk, but I also love rice milk (which is made of brown rice -- but make sure to check ingredients -- and/or almond milk (I'm not sure this is okay or not). There's also some crazy things like hemp milk that I, myself, have never tried and am kind of afraid to. LOL. But there are so many alternatives out there. The only problem is I don't know if a 16 year old would like it, but if she wants something instead of dry cereal, it's something to try.
I also love Tinkyada and have that up in my cupboard right now. I like the bunny rabbits. LOL. The pasta is made from brown rice.
Reading labels gets easy after a while. I read labels all the time, being vegan and all, I have to. But you get used to what to look for.
Good luck!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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luvs2ride
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posted
Healing my gut is healing me. I hope your LLMD will also test for H. Pylori.
I have a cow milk protein allergy and a soy protein allergy. However, I can have rice milk which I think is just yummy and has none of the fat of animal's milk. Also, I can have goat milk as it is a different protein. Check that one out with your doctor. I don't use the goat milk, but I do use goat cheese, butter and yogurt.
Stevia is an excellent sugar substitute and good for you. I prefer the powder.
If she is celiac, you have no choice but to get it out of her life. It is hard to learn, but once learned it is not difficult. And Celiac disease actually has lots of pastas, breads, pastries, cakes, pizzas, etc available.
Some of the other food allergies will go away once her gut is healed but celiac is for life.
Yale did a study on AIDS and found the virus hiding in the gut. They also learned from this study that 70% of our immune system is in our gut. It is believed that a damaged gut lies behind most of our chronic illnesses.
Be careful of Taco Bell or any other cheap restaurant meats. They use soy as a filler to stretch the meat further. I can eat a hamburger at a good quality restaurant with no trouble, but a Hardee's burger will have my joints swelling and my tummy rumbling. That is how my body reacts to my food allergies. Hers may react in a different fashion.
Once she gets on the right diet, she will get to where she can tell immediately if she is ingesting something she shouldn't. It is best to avoid any foods with more than 2 ingredients unless you prepare it yourself. That is the only way you can be sure.
Butter is on everything you eat out. I recently ordered a steak, baked sweet potato and brocolli. I told the waitress of my dairy allergy and she said "I will be sure and tell the chef not to use butter on your steak". Man, I never dreamed they buttered steaks. You've really got to watch it.
Good luck to both of you. Any possibility of a Celiac group in your area? Perhaps she could find other teens with food allergies and learn from them.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
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posted
PS: Most doctors are clueless about diet and illness. They only know about the skin prick test which is very poor for food allergies.
Cudos for your doctor that he/she is so aware and knowledgeable. Don't you dare give him/her up! Healing your daughter's gut will heal her.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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sometimesdilly
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posted
sorry, Carol, that your daughter's climb back to health just became more complicated.
i don't envy you having to battle a teenager about her food habits. i step-mommed a teenage girl long before i had one of my own, and oofda, getting her to eat well just because she should was difficult enough.
by the way, i second TC's standard recommendation of L-Glutamine to help with leaky gut.
it has worked wonders for me, and even for my Lymeless DH, who takes it anytime his belly is bothering him.
take care- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Oh I feel for ya sista....My 20 yr. old daughter (no LD, we hope!) had major GI issues-finally went gluten free last May. She was never officially diagnosed as celiac or gluten intolerant-
It is a steep learning curve, but you can do it! In our case complicated by the fact that she is a college student who doesn't live home, and doesn't want to learn to cook.
Beware of labels that say "wheat free" but are not necessarily "gluten free." I unknowingly sabotaged earlier efforts to go GF by indulgently buying her Paul Newman's oreo style cookies
The upside is she reacted positively right away (like a miracle!) and the few slips ups have been noticed just as quickly (Huge motivating factor for her to learn as much as I have!)
Pamela's baking mix is good for pancakes & I find it works OK for recipes calling for bisquick! (french apple pie, zucchini pie) Her cookie/brownie mixes are yummy too-though they might have soy.
Also found a very easy & good french bread recipe that freezes well-Can try risotto (Lundgren's?) & Thai curry rice (Thai kitchen brand)
I hope for both your sakes the diet is temporary-maybe that will help her get through it! The specialty foods are pricey. but once you get down to basics in meal prep very doable.
When my daughter is home, I make GF meals for all-only minor adjustments have been necessary-Because of what I have read I do use separate wooden spoons,cutting boards, and colanders for GF dishes-
See if you can get a copy of Gluten Free for Dummies (nothing personal) It's a good starting point!
Hang in there! Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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lymednva
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Cobby,
I learned this summer that one of my former second graders who was on my list of "clinic queens" that year, turned out to have Celiac.
She is now a freshman in college and her mom told me that following the diet had really changed her life.
She has decided to study nursing, and I think her own health issues have played a part in it.
She is a very sweet young woman and I would be happy to contact her for you to get her take on it, as one teen to another, if you are interested. I'm pretty sure she'd do it for me.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Cobweb
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posted
I vaguely remember, through the fog of shock, the LLMD saying something about being able to add some things back in-such as goat's milk, after a while.
I'm glad to get the advice about rice milk. No dairy for now-not even yogurt!
She can eat "Western" Shrimp? What the heck is "Western " shrimp. Isn't shrimp shrimp?
Ironically, as we were driving to the appointment ,but not very fast because we were stuck in traffic,and
I was grumbling about the fact that the doc wouldn't give me the results over the phone, and I was going to wind up paying a hundred bucks to find out everything was normal.
HA!
Anyway- I can tell I'm going to wind up printing this thread out.
Now I have to look up GLIADIN.
Cobby GluttenFree for Dummies sounds like the book for me! Actually it's probably the only book for me right now.
And Lymednva-thanks for the offer. Carolyn needs time to get used to all this before she's receptive to talking to someone about it. When the time is right...
But that's exactly what I am hoping happens for Carolyn-once she is eating the right foods she will realize how much better she can feel.
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posted
Here to save you some research time: gliadin is a protein that helps make gluten.
Posts: 984 | From San Diego | Registered: Nov 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Some rice milk also has barley, which is gluten.
Was your daughter tested for celiac disease (blood test). If not, you might want to have that blood work done while she's still eating gluten.
You might wonder why I suggest this ... if she's a true celiac, she will have to avoid gluten permanently.
I have a slight gluten intolerance, but not celiac, so I am able to have gluten once in a while just like other foods that I have a sensitivity to (fruit juice, peanut butter). If I eat these foods no more than once or twice per week, I'm okay ... obviously it's better not to eat them at all, and generally I do eat 100% gluten-free, but it's nice not to have to drill a cook at a restaurant about ingredients.
If the blood test she already had was an allergy test, it does not test if it's celiac ... all you know from it is that she has an allergy/intolerance.
Often celiacs have to cut out dairy for the first six months while the villi heal. Some are actually intolerant to casein, and can never add it back in, but for those who are lactose intolerant, it often resolves as the intestines heal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
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posted
FYI to dear readers: Leaky gut tends to be from an overgrowth of our friend, Candida yeast, becuse it hooks itself into the intestinal walls and leaves little tears that let food into the blood stream.
Then the body develops an immune reaction against many kinds of foods, especially those you eat the most of.
Carol,
So your daughter (and half her class no doubt) have leaky gut.
Carolyn is lucky to have you helping her to figure this one out, although she is certain not to know it until she's at least 29.
Here's some good news. I am confident that Carolyn can get past this, even as a teen-ager.
I have been through bouts of leaky gut and food intollerances over the last 20 years. Now all's well, and no food restrictions.
And about it taking a lyme doctor...they seem to be the only ones besides naturopaths who realize that most Americans are full of parasitic bacteria and fungus.
My tricks and shortcuts:
Eat raw garlic:
Not kidding. Nothing clears a bout of dysbiosis as fast or as thoroughly as a chunk of raw garlic swallowed without chewing and chased by something that tastes good twice a day!
It works both in the gut and systemically, and besides, it kills lyme and other bacteria and fungus as well, while boosting the immune system. (Also clears vaginitis overnight when inserted.)
I'd make a deal with her and give her a very small amount of something she's not supposed to have for each garlic swallow.
Probiotic enema:
Yeah, I know. Getting a 16 year old to do that...
CY chocolate:
Sugarfree chocolate that tastes amazing and is allowed on candida diets. You can Google for it but I won't post the website because it could look like sales. (I don't sell it.)
It's a bit pricey, but you could see if she would trade in the halloween candy for some CY.
Corn crust pizza with almond cheese topping:
You buy the ingredients at a whole foods store, and put it together yourself. Again, its pricey and not the real thing, but it still looks like pizza.
Grains:
Brown rice and quinoa. They are really good with Braggs liquid aminos (mild soy sauce) on top.
Tupperware:
I throw dinner's leftovers of grains, rice and vegetables into separate tupperware containers for lunch boxes. Or used to.
My twelve year old wouldn't be caught dead eating real food at school. But she will eat stuffed grape leaves in front of her friends. Go figure.
V8: At least it looks like fast food or a can of soda.
Brown rice Rice cakes:
Can be used as a bread substitute to spread things on.
Earth Balance buttery spread:
dairy free and better than butter (Not natures balance)yum!
NAET:
Problem with leaky gut is that it can make you intolerant to so many things.
NAET allergy elimination worked for me once my leaky gut was healed.
But careful. The allergies came back when I got leaky gut again, and I had to redo the whole process.
I was fortunate to be able to trade with somebody for the work. For my own child, I'd see if I could take a class in NAET then do the process at home.
Good luck. Another adventure in parenting!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Cobweb
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posted
Blood Test-goofyx6
She is to avoid ALL GLUTEN-at least for now.
Today when I picked her up from school she asked if it was something you could die from.
I told her no. First we heal her gut by being really strict about what she eats, then it can be managed and she will probably be able to add some foods back in.
Poor baby- I wonder if she went through her whole day wondering if she was going to die. I'm glad she asked.
posted
Bejoy-garlic, corn and dairy are on her avoid list at least for this first month.
But brown rice cakes should be okay- I will check out the ingredients.
Ahhh-the adventures go on and on...
I'll look up the CY chocolates-thanks for tip.
6goofykids-yes she was treated for Bart- Rifampin? I think that was it. along with Doxy
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sixgoofykids
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posted
Yes, but was it an allergy blood test or a celiac blood test ... that would be important to know. If it's celiac, it's for a lifetime.
Celiac is different than intolerances or allergies.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Cobweb
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quote:Originally posted by sixgoofykids: Yes, but was it an allergy blood test or a celiac blood test ... that would be important to know. If it's celiac, it's for a lifetime.
Celiac is different than intolerances or allergies.
Food Antibody Test-IgE antibody testing? Don't think it was allergy testing-says looking for immune system's response to certain foods.
Doc said she doesn't have celiac- but does have leaky gut syndrome.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
The celiac blood tests are a lot more accurate than they used to be. Your doctor is right that she can't be officially diagnosed by blood test alone, but if you had IgA and Ttg to go along with the IgG, then you would have a good idea of whether or not it's celiac without having the biopsy. IgG will not give an indication of whether it's really celiac -- an autoimmune disease. The only reason I bring up the whole celiac panel now is that once she's gf, it can't be done without eating gluten for several months first.
The other thing about the biopsy, it can prove celiac, but cannot rule it out.
The diet gets easier .... it becomes second nature. I know that seems impossible, but it really does. It just takes time to sort through it all and eliminate all gluten. For a couple months I thought I'd never get the hang of it ... now it's easy.
My non-gluten intolerant kids eat mostly gf (except for school lunches). If I buy regular bread, they won't eat it ... no, they like my $5 loaves of gf bread so much better! LOL
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymemomtooo
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Member # 5396
posted
Cobby, so sorry..My daughter was diagnosed with a low gliaden issue. I went just as nuts as you must be at the moment. I read, traveled to the best health food store within an hours drive and got some advise.
I came home with tons of possible alternative things that seemed to be ok and a cook book or two.
A lot of money was dropped.
For about a month, she did pretty well and followed the diet. Major improvements in her attitude at the time..
Then the Duck endocrinologist had a fit and told her she did not have high enough numbers to concern herself with this diet..All went out the door.
Good luck..I know this can be done but let's hope that all the drs are on board..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Itsy_bitsyone
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posted
I never had awful stomach issues until abx.
I mean, I have always been sensitive to milk products since I was a kid. BUT most things I can eat, no problem.
I do have high cholesterol but LLMD is putting me on Whelcol (sp?) I just haven't started taking them yet.
I have clarithromycin and plaquenil sitting there too. Any moment now I will get the guts up (he he pun intended) to take this stuff.
Soy...Carol, best to avoid it anyway. Soy is one of those marketing healthfood nightmares. It will cure what ails you...you'd think it was a panacea with how it is marketed....
HOWEVER...what most people do not know is that soy is a goiterious food. It inhibits thyroid function. I avoid it completely when I can...which is hard because its in almost everything...but while its difficult to avoid completely...I think trying to keep it out of my diet has helped greatly. My TSH has gone from 36 to 4 over the last 5 years with no meds. I don't have hashimoto's, btw. The low thyroid is just from long term untreated infection wearing down my body. Cutting out soy and adding a little l-tyrosine now and then made me go from awful awful hypothyroid to marginally subclinical.
That being said...I do eat wheat. I love wheat. I sop up my low fat italian dressing from the bottom of the salad bowl with a nice peice of wheat or pumpernickle or rye. YUM.
If you eat sugar free chocolate...don't get it with sorbitol (common)...worse for the belly than chocolate will EVER be.
The only thing I could find negative about the lab cobby is that they do a urinary test for neurotransmitters. Everyone knows those are nothing but propaganda. Or, at least, I think they do. Even if you could measure neurotransmitters in pee, we have no idea what is normal and what isn't normal because no one knows!! So, that's kinda fishy. Other than that, I have no idea.
Carol, I have to hand it to you....not easy.
Have to hand it to your kid...walking around thinking this would kill her...glad she asked you...my kid (she's 10) sometimes DOESN't ask stuff and stresses herself out SO bad.
We need to get together and you can tell me how to handle early puberty cause I am pulling my hair out AND you have only recently had to experience this!!
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TerryK
Frequent Contributor (5K+ posts)
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posted
I'm allergic to many of the same things that your daughter is allergic to. I think lyme causes massive allergies in some of us and of course leaky gut will cause allergies to anything we eat.
I don't know if your daughter will have this issue or not but I find for myself (and I think it is fairly common) that if I eat the same food very often, I develop an allergy to it. I must rotate foods every day or two. That's not easy when there are so many foods that you cannot eat.
My personal opinion is that you will not be successful if you try to force your daughter to give up everything that she is used to eating before you have suitable replacement foods. Maybe if your daughter was 8 and you had complete control this would be doable, but a teenager is a different story. Also, it sounds like there will be resistance since she is voicing a lack of confidence in the doctor.
Spending some time working on finding replacement foods and educating your daughter and yourself on the consequences of leaky gut and allergies seems worthwhile if you are to have success. Help her to understand the great benefits that she can get from this. On the other hand, you know your daughter, if you think you can brute force her into complying then maybe that is the best option. If not, consider carefully how to best get her on board with this new life style. I personally feel that your doctor is expecting a lot from a 16 year old if she expects her to give up all this food and be ready for a re-evaluation at the end of this month. I would personally give it at least an additional month but that is just my own experience.
I spend a fair amount of time at my local organic health food store. You can buy rice pizza crust, milk free cheese, hemp flat bread, egg substitute and many other things to help her get through this. I find that I must bake my own baked goods most of the time. There are many many good cookbooks out there.
You and your daughter may have a bit of a physical reaction to giving up most carbs all at once. I find it best to work at replacing things as I move along eliminating things. It is not easy finding food to eat out in public so I often bake something and take it with me.
I'm sorry that you and your daughter have to take this on. It's a big shock to the system and the psyche to take away almost everything that one is used to eating. Easier for an adult but not so easy for a younger person.
I don't mean to discourage you but I think setting up a plan that is less drastic initially might be doable whereas suddenly cutting out most of what she eats before you have suitable replacements might just be overwhelming and set you up for failure.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Cobweb
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posted
I'm planning to take Carolyn's food list to Whole Foods Sunday afternoon so we'll be stocked up by the time she comes home from weekend away.
She also asked me if this is why she is so short. She's not really too short, but she is the second shortest kid in her class. She has always bemoaned her short stature.
We lead a double life, the only two docs involved are LLMD and Pediatrician. The pediatrician has already undermined LLMD, telling us all Carolyn needs is more protein ,multi vitamins and a shrink.
We do not mention the recommendations of the LLMD in front of the Pediatrician.
posted
Hi Y'all. Just thought I would do an interesting update!
Almonds Almonds Almonds-where would I be without my Almonds.
My latest greatest treat is Almond Rice Bread with Almond Butter and Sugar Free Strawberry Jam, washed down with Vanilla Rice Milk (unsweetened).
Carolyn and I have made a great transition-and she has been 80% compliant. She has found out the hard way that cheating is not worth it.
First time she crawled into the car after school telling me how much her stomach hurt-and how gassy she was. We rode home with the windows down.
She had spent the night at a friend's and because it was Meatball Subs for lunch the Mom didn't pack anything for them to eat-so DD had a meatball sub-and we all know how much wheat and bread goes with a sub.
I told her next time she is in that situation-eat the meatballs without the bread.
Her next escapade came when , again, she had spent the night at a friend's, the same friend, only this time it was a Chick-Fil-A chicken sandwich for lunch that did her in.
And finally , Monday morning, I got an urgent call to pick her up from school because she was really sick. When I arrived she was sitting in the girl's bathroom over a toilet full of throw-up.
Poor baby. The report from the principal who kept checking on her was that Carolyn confided to her that she hadn't been as strict with the diet as she coulda/shoulda been over the weekend-which alas she had spent with the same girlfriend.
So lessons learned-and I didn't have to nag at all. She just keeps testing the waters and getting the same results.
I had offered to pack food for Carolyn, but she said no-Ms Gloria was making foods she could eat. Probably true-but teenagers snack , so I'm sure there was quite a bit of forbidden fruit so to speak over the weekend.
From now on-I will pack a food bag for her if she is to spend the night at a friend's. She doesn't complain at home,seems rather stoic about it all to me.
Her follow up appointment is Oct. 31st. I asked what her plans were-she has several options-all of which include trick or treating. In the past, she hides her stash and feeds off of it for weeks.
This year I told her candy on Halloween night, but then no more. She agreed. Actually I don't think the candy will cause as much distress as the wheat, barely , oats, soy, milk, peanuts and bananas do.
Me? I love the fact I don't get hungry hungry in between meals. Knock on wood I enjoy the foods I can eat and have much much less abdominal distress.
Thanks again from those who have been there,done that. Carol ps-and thanks Terry for finding the thread. Don't know why my search didn't get results. Ah well.
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WildCondor
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For leaky gut, get a Metametrix food allergy test IgG and IgE and also take a ton of glutamine every day and avoid all allergic foods that show up on the allergy test.
quote:Originally posted by WildCondor: For leaky gut, get a Metametrix food allergy test IgG and IgE and also take a ton of glutamine every day and avoid all allergic foods that show up on the allergy test.
She already had testing-by Biotech. All these little episodes are reinforcing what the tests confirmed. Makes my job as the enforcer easy.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Cobweb, very interesting thread. I have 23 yr old niece that I believe has had TBD for about 5 yrs. Her mother (my sister) refuses lyme dx, even with a known deer tick attachment when all this weirdness started.
Dx with colitis. Doing the diet. She does what people typically do and cheats sometimes. When she has a major flare-up my sister says she runs a fever and has flu-like sx. Sister says that's just a flare-up of this illness????
Duck told them she doesn't have any good bacteria. I tried to tell her that's because the bad have overtaken the good. Who's the bad guy?
She was on abx for several months early on because college campus duck tests. Then they refused her abx anymore. So no doubt she killed the good bacteria in the gut and now she can have long periods of constipation and then long periods of diarrhea.
My sister just can't understand why my niece is so tired all the time? Why doesn't she feel like going out in the world with her college degree and starting her career?
I don't know what else to do but kidnap my niece and take her to Dr C for a real dx. I need advise?
Anyway, sorry I got long winded. Does fever spikes and other lyme like sx happen with your daugher????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Cobweb
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posted
Hey Map- I assume your niece didn't take regular doses of probiotics when she took those abx's in college. If not-I agree with you- makes her a candidate for yeast infection or candida.
I am not familiar first hand with colitis-although sounds real close to leaky gut syndrome which is an inflamation of small bowel.
My daughter certainly has the fatigue and abdominal pain, but not the fevers.
I was diagnosed with IBS-alternate constipation/diarhea- didn't find the gastro duck very helpful- I got a script for diarhea and a suggestion to go to a shrink. PFFFT
Perhaps you could give both your sister and niece information about how to be tested for food allergies-not the dramatic type of allergy that causes shock and imminent death-
but the type of foods , for whatever reason, that cause inflamation and a "leaky gut"
We used US BioTek Laboratories. WC recommends Metrametrix.
It was a simple blood test,finger stick, drops of blood, sent off to lab-with well detailed printed out results.
I am not familiar with the colitis diet, but it won't work unless the foods your niece is sensitive to are known.
If your niece is 23, it shouldn't matter what her mother thinks-is she willing to go to any lengths to find out what's wrong.
Sounds like her depression may be interferring with her ability to advocate for herself. So if you are willing to step in, and your niece is willing to let you help-then follow your intuition.
That's what I say-and you thought you were long winded. Ha
Bottom line: If your sister wonders why her daughter is not productive-then I would hope she will step out of the way, and let you help with the situation.
Carolyn's attitude is pretty flat. She's not real motivated to initiate treatment, it takes the LLMD to point out that 16 year olds shouldn't be so wiped out all the time.
Don't know if this addresses your concerns. So hard to be a bystander when you know there is more that can be done.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Carol, I'm glad she's doing well on the diet.
I wanted to say .... meatballs usually have bread in them, too. It's the hidden gluten that gets really difficult to eradicate!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
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posted
Thanks Cobweb for your insight. My sister is the most stubborn women I know. I'm sure the doctors told her it's not lyme and anyway daugther took enough abx to kill the lyme, so said the guy with the medical degree.
Thanks again. I will find a way to help her. It's a sad life this 23 yr old is leading due to her illness. Recently her high school/college sweetheart broke it off. Now she thinks no guy will want her because she has this "illness".
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Cobweb
Unregistered
posted
quote:Originally posted by sixgoofykids: Carol, I'm glad she's doing well on the diet.
I wanted to say .... meatballs usually have bread in them, too. It's the hidden gluten that gets really difficult to eradicate!
You know, right after I gave permission for Carolyn to eat those meatballs I realized they probably do have gluten in them.
At home we just make straight beef meatballs. Wonder how meatloaf tastes with gluten free bread?
A new Health Food store opened up nearby- I go past it practically on a daily basis-so I stopped by the other day.
They have a gluten free "pantry"-limited selection, but then other items on other shelves that are gluten free have a red dot on the price card. Easy to spot. Spent 70 bucks !!!!!
Things will ease up, I hope, Oct. 31st at follow up appointment when doctor indicated we may be able to add some things back in-like goat milk, or goat cheese.
I bought something the other day for Carolyn-she immediately read the label and announced "this has soy-I can't have soy" Good for her!
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Halloween Night. She'll probably get sick as a dog. But then jump back on the bandwagon before her next appointment in Nov.![[Frown]](frown.gif)
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I enjoy the foods I can eat and have much much less abdominal distress.![[woohoo]](graemlins/woohoo.gif)
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