Topic: Any link to Lyme and Celiac / Gluten Sensitivity?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks:
My daughter tested positive for Lyme in May and did 3 months of ABX. Now in remission (thankfully!)
When she was diagnosed, she was given an Elisa for food allergies / sensitivities. She came up high in wheat and gluten.
We put her on a gluten free diet to see what happens and she had a Celiac panel done to rule out Celiac.
Fast forward to August, one of the markers on the Celiac panel came back positive, but all others negative.
She had gluten while we were on vacation for about a week and didn't seem to have any issues.
But about 3 weeks ago she had gluten again and got severe stomach cramps and then vomited about 1-2 hours after eating it. The same happened about a week later, and then again this past weekend.
At first we didn't think this was due to gluten as she had it all week in early August and was fine. But now we see a definite pattern. If she has bread / gluten / wheat...she gets bad cramps within 2 hours and then vomits hard.
I've got no idea why there is this change in only a few weeks. The only other thing I can think of is she was on abx when she had gluten in early August. And now she isn't.
Also, one of our children was diagnosed with pinworms (Gross) and she did 2 rounds of Pin-x. And since then she is now puking when she has gluten.
Any ideas?
I know that mold sensitivity and gluten sensitivity are closely related.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
| IP: Logged |
posted
I would imagine that Lyme or parasites could change things in the gut .. exactly as you are experiencing with your daughters.
I know I went from being able to eat most foods to now being extremely restricted. So it does happen.
I don't really know WHAT happened to my gut, but I know it can change overnight. (or so it seems)
Maybe you can treat both of them for parasites and see if they make progress.
But do keep them away from gluten.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Right now, I can't type much. Maybe later. I can't explain why I feel so very strongly about this statement yet I just have to put this out there and come back later with links, explanations.
For what it's worth, I've been there, done that with the not wanting to believe it. One positive marker is very definite.
Based on that positive marker and her very profound and classic experiences, it is exceedingly clear that
Your daughter has celiac. No doubt about it.
She should never have even a trace of gluten. Any prepared foods should be certified gluten free and prepared in a place where there is not cross contamination.
For starters, go to Celiac.com -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Infections cannot cause it, infections can turn on the genes that are the underlying "cause" and once they are triggered / turned on, there is no going back - not with celiac.
But it need not be dire. It's a steep learning curve but then it gets easier.
Any Rx should also be gluten free. This matters greatly. Same even with lip balm.
As for the times gluten did not seem to bother her, yes, that can be confusing and I'm / she is / are not the only ones to be fooled by that. But there is no going back now.
More later. Sorry she is going through this yet it's very good to know as gluten can cause all kinds of issues with nerves and brain, too, for someone with celiac. It will get easier. And she'll learn so much and feel better.
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, with a new law making this worse, many foods that are labeled "gluten free" are not at all safe for someone with celiac.
There is a specific certification. Many foods in stores can say they are gluten free and still contain gluten or be made on shared equipment. Shared factory is also not good if there is not a separate ventilation system and a certified dedicated gluten free space.
This is not at all like a weight loss diet where bargaining can happen. There is zero - zero - room for bargaining with gluten.
If she has some again whether by mistake in being unaware or trying to push it - she might get lucky again. But that luck can be a dangerous trickster.
It's about a TRACE AMOUNT and how that sends all kinds of chemical messages and causes all kinds of reactions not just in the gut, but even the brain. Damage can happen to nerve cells / brain cells, too. So that's why it matters so much.
The celiac education organizations can help more on this topic.
Delis or cafes where wheat, spelt or barley flour is used in the kitchens cannot claim to have gluten free meals, either.
Soy sauce is out. There is a gluten free tamari, though.
Cutting boards, utensils, etc. must all be separate.
At home, if she finds a gluten bread that actually works for toast, a separate toaster would be required.
I know this all sounds too much, and I just don't have the energy to make this just right at this time.
If you want some specific brands for lip balm or this or that, do post if you want that. And the celiac sites are good for that, too.
I have found some excellent brands and I challenge anyone to say they want to eat this or that and not find a way for it to be made GF - and most often with foods that come right from the earth. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
My daughter has a similar problem to yours. She now can eat wheat, but after so much pain in the past, she is afraid...
Lyme made my and her allergies MUCH worse. they increased clearly in number of allergies and in intensity.
When lyme was gone, we got better from many allergies, but not all were gone. for her, gluten remained.
I think lyme is a gut disease, in my view. It is linked to candida (that always affect the gut, no matter if the candida looks to appear elsewhere).
As lyme weakens immunity, parasites will also grow. Just think about lyme bacteria, bart, all the other parasites, then lyme toxins, herxes, whatever, all dumped in the gut through the bile.
I do think our guts are not made of steel, and as every single lyme sufferer suffers from the gut, well, allergies and digestive problems may arise, even when lyme is gone.
For us, lyme is long gone, but we still need to fix our guts.
We test people energetically for more than a decade. I never found anyone that tests good for wheat. Agro-business transformed old wheat into something for exclusive commercial purposes, and the amount of gluten in our modern version of wheat is way too high compared to other less commercial crops such as spelt.
Add that gluten to glyphosate (not only for GMO crops but for any non-organic grain crops), and the mix becomes a gut bomb.
Glyphosate (round up) will destroy good bacteria in the gut, and allow very pathogenic bacteria to grow (such as Clostridium, that is the cause of botulism, extremely pathogenic!!). There are studies done in Germany among farmers who are in contact with glyphosate.
If you see people affected by glyphosate, their tummies become flat, their muscles wasted, they can't digest well...
Every time lyme infection got reactivated, or I got bitten again in the past by a contaminated tick, I just waited less than a month and many of my food allergies returned. It was very fast.
My daughter gets better and worse concerning gluten. Sometimes hit looks as though problems disappeared, then they come back in revenge.
Now we finally decided to live gluten-free. We see immediate results (more energy, less fatigue, clear mind). So we keep on going. It is not as hard as it seems.
It gets hard if you stick to same products (like bread, cookies, pasta), but if you shift your food and cooking habits, it isn't that hard as it seems.
The number 1 tennis player Jokovitch is on a gluten free and milk free diet, and he said he sees a lot of profit from that (he is not sick, of course, but he needs to be gluten free to have the energy to continue being a high performance sportsman). He even wrote a book about how his diet changed his sports career for good.
Posts: 6200 | From Brussels | Registered: Oct 2007
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Do y'all think someone can go back to gluten and casein if they are in remission?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: " . . . someone can go back to gluten and casein if they are in remission [from lyme/TBD]?"
Not if they have genetic celiac.
[Regarding gluten avoidance, that is; casein might be different yet there are likely some genetic issues with that, too]. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I can attest to the fact that www.celiac.com is a great board for info.
That is where I first met "sixgoofykids" .. can you believe that!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all.
We aren't yet sure it is definitely celiac. It could be given she tested positive on one of the tests on the panel. Ttg IgG. But this isn't as specific for celiac as the IgA which as negative.
It seems much more like a gluten or wheat allergy as she gets cramps and vomits 1-2 hours after having it. This was the same reaction she had years ago when she used to eat shrimp due to shrimp allergy.
Most I've read about celiac indicates it is more intestinal and the reaction takes longer to appear and lasts longer (days)
My daughters appears in hours, is concentrated in the stomach, and then is gone after she vomits
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The genetic tests should have letters such as DR and DR Q and a few different combinations.
The IgG and IgA tests don't test genes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say "We put her on a gluten free diet to see what happens and she had a Celiac panel done to rule out Celiac." (end quote)
Not sure of the timing, yet
If the panel was done after she had been off gluten, it can't have information that would show were she to be on gluten at the time. for some tests, the results might not be accurate in showing her body's reaction if she was not being exposed. Same with any stomach biopsy.
They did mine all wrong and did not tell me that I should have been eating a couple pieces of bread each day for at least a couple weeks before the biopsy. It was negative but they never asked if I was already gluten free.
I had two other "panels" done, one blood, one saliva and also had been off gluten by then. So those tests just weren't going to "challenge" my body and the tests were a waste of money in my case.
That was years ago and I don't know the specifics these days but a body off gluten is not usually going to show the same as one on, if there are issues. there can be false "okay" results.
The specific lab would have more detail.
[totally messed up continuity here, sorry.]
No way could have tolerated actually ingesting gluten so a then to come along wise doctor did genetic testing for me -- and considered my past experiences for the final diagnosis.
Her reactions to gluten are very much evidence, IMO, too. Even if doing okay sometimes but clearly not other times. Yet, as Brussels brings to mind: GMO foods, too, could be a major matter here.
While even a genetic test can't say 100%, when they talk about chances, they don't take into account that someone might get an infection that can trigger even long-shot genes.
Genetics - family history, can skip generations and also celiac is not always a stomach issue, it can manifest in all kinds of body systems. This is now only coming to light. So blood relatives might not have had obvious signs.
Sprue was one of the first infections that brought celiac to light, just for some background. Had many with Celiac sprue never gotten a sprue infection, they may have had recessive celiac for life with no symptoms. But, once it was triggered, well, there was no denying it. Other infections likely act similarly.
The best test might be total avoidance for six months' time. And GMO free, too. Gluten can "hang around" and cause reactions in the brain for up to six months after ingestion for someone who is truly celiac.
People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 25-30% of all people.
Carrying HLA DQ2 and/or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease.
However, if you carry HLA DQ2 and/or DQ8 your risk of developing celiac disease is 3% instead of the general population risk of 1%.
Since celiac disease is genetic, this means it runs in families.
First-degree family members (parents, siblings, children), who have the same genotype as the family member with celiac disease, have up to a 40% risk of developing celiac disease. The overall risk of developing celiac diseaes when the genotype is unknown is 7% to 20%.
Who Should Have Celiac HLA Testing? . . . .
. . . Treatment
The gluten-free diet is currently the ONLY treatment for celiac disease and non-celiac wheat sensitivity. . . . -
[ 09-19-2016, 08:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Referring back to Brussels' excellent detail about GMO foods / Glyphosate (round up) there is a documentary link here that shows what happens in the stomach with GMOs: Roulette is in the title of the film. It is extraordinarily good information.
[ 09-19-2016, 09:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sorry that two of your children are experiencing such profound symptoms.
While each person's "case" has many variables, what you describe takes me back years to places, times, exactly what I ate that I found out should not have eaten . . . but it took decades to figure out. So much dismissal along the way.
I do think the road is getting clearer for both your kids, though. They are lucky to have you looking deeper for them.
And, the frightening part of having these episodes happen is very hard to deal with, too. Some of that emotion just came back to my memory. I hope they can learn before long that their bodies are not really against them. That takes a while after such episodes, though.
I will say that my "hits" from gluten have me quite happy to have said "goodbye" - may they also feel better.
I'm not sure science and testing is at the point where all answers can be found. We have our own test labs right with us, though, and very often our bodies are good at turning on the red lights.
Good luck to you all. And, in my posts above, I wish I could have been more concise. Not a trait of my brain, though hope you can make sense of what I was trying to say. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
40% of the population on the planet have the genes for celiac. Mostly, they lay dormant until something traumatic turns them on. The three most common triggers for turning on the dormant gene are car accidents, pregnancy, and surgery.
I think it is likely ABX turned on her dormant gene. I have a friend whose sister has celiac, and after a bad bought of food poisoning, he developed celiac too.
It's quite common, and your doctor is fooling himself if he thinks intermittent ingestion of gluten will give you a positive result for celiac. The ingestion must be regular and long-term.
Dr. Peter Green, one of the world's foremost experts on celiac disease once told me that if you have been gluten free for 6 months or longer, no test on God's green earth will give you a positive result for celiac.
I myself have a TEN MINUTE reaction to the ingestion of gluten. I am very lucky in that I always know what the offending food was. You could set your watch by my reaction. I don't vomit though, and I am sick for about a month.
It could very well be that your daughter is saving herself quite a bit of long-term suffering by vomiting up the offending substance.
I will reiterate what everyone else said. I personally react to under 5ppm although the FDA says that's not possible. So to remember that LEGALLY "gluten free" is 20ppm, so read every label you run across. Every time. Even if it's something you buy every day. Sometimes ingredients change. Trust me on this. It can be very, very bad.
If you have any questions I am a great resource. I've been doing this for AGES and love to help!
Posts: 31 | From CA | Registered: Sep 2016
| IP: Logged |
posted
If you have time to watch tonite/before 9 or 10am EST Tuesday, www.medicinalsupplementsummit.com is having an Encore Day - all 36 talks available for free viewing. A couple experts discuss gluten sensitivity.
I just listened to nutritionist Trudy Scott pn the summit - she discusses gluten in her amino acid talk, including how she gets people off gluten. You might check out her website. She also is knowledgeable about Lyme disease.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
The pain your daughter is experiencing is almost exactly the SAME pain my daughter had. It came not as clearly, at first. But when it settled, my daughter had the following reaction to a TINY BITE from the ice cream waffle (she bit it by mistake, as it got soft with the ice cream).
The bite was really TINY, she started feeling pain in LESS THAN 10 MINUTES after that.
The cramp was so INTENSE, she stopped walking and bent herself to the ground. She couldn't walk, we had to take her in to a restaurant and she laid there for about 2 HOURS, with tears running, non-stop.
It happened before to her, that is why she had been avoiding wheat and gluten about 3 years ago or so.
Her gluten-free diet lasted about 2 years. ----------------------------
Fast forward 6 months ago: she was eating gluten in SPELT, every single day, as the wheat-pain subsided.
Her sensibility to gluten wanes and comes back since her birth.
She dislikes wheat, probably because of higher intake of gluten in wheat. So since that episode about 3 years ago, she avoids wheat, but she can take it, in small amounts, without reacting to it.
So we thought. ---------------------------------- Fast forward this June 2016: she decided to order gluten free diet for a summer camp, as the other options included too much gluten (pasta, bread etc).
So she didn't take her spelt (which is the old form of wheat, with less gluten than wheat) for one week.
She said she never felt so STRONG and energetic in years!! That single week proved to her that gluten takes her energy off.
She would usually be tired after exercising, and she had been having a lot of colds and stomach bugs for the last year.
A lot, to the point that 2x a month, I had to pick her from school. She missed school about 4 days a month due to colds.
Since the DAY she stopped taking GLUTEN this June, she didn't catch a single cold or bug. Nothing, really.
She said that during the climbing-camp, all children were suffering from muscle cramps, but she said she barely felt anything. They had been climbing a lot, but she was surprised.
After listening about Jokovic, the number 1 tennis player, and his book telling how STRONGER he got, more concentration, more stamina after cutting gluten and milk, well I have no doubt that gluten was mining her health, slowly, but surely.
She forced me to stop gluten, so I did. And I feel that my energy lasts until 9pm easily, while before, at about 5pm, I was tired. -------------------------------------
So the question: can we eat gluten, wheat?
Yes, we can. Despite my daughter's extreme reactions to wheat in the past, she CAN eat wheat today.
----------------------------------------------- Does the allergy come and go?
In the case of my daughter, it is CLEAR that it comes and go. Her first reaction to wheat started at age 10 months: her WHOLE BODY was covered with very itchy rash.
The rash disappeared less than a week after getting rid of wheat.
From then on, we stopped and re-started gluten many times. Minimum time to stop gluten is 6 months.
The 'allergy/ intolerance' takes different turns, changes symptoms from skin rash, then tummy pains, diarrhea or loose stools, and finally, to less concentration, less muscle strength, less immunity to infections.
------------------------------------------ How does it go away?
By avoiding wheat and gluten for at least 6 months.
NAET, allergy dissentization techniques do not work as well as gluten-avoidance.
This come and go problem happened so many times for her.
-------------------------------------------- Does she eat wheat / gluten, because she can eat it today?
Answer is NO. She avoids wheat and gluten, but will take a bit (like a piece of a birthday cake) from times to times.
She told me that she notices in a few minutes her LEGS going weak, when she takes the cake.
Unbelievable!!
----------------------------
Posts: 6200 | From Brussels | Registered: Oct 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Our mission is to raise awareness about GMOs and toxic exposure, empower leadership, and create healthy communities.
We support local activities, initiate campaigns and share solutions nationwide to improve our health and freedoms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glyphosate has been found in Vaccines. A new article just added to the links set.
VACCINE INGREDIENTS - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all.
Having celiac or being gluten sensitive isn't he end of the world, fortunately.
I just want the violent reactions to go away when/if she accidentally has it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Yep, it is not the end of the world.
In fact, it is rather easy to stop eating gluten. Easier than I thought.
We eat more potatoes and rice, and diminished carbs, which is a good point.
After fighting lyme and doing all those hundreds of treatments, bitter herbs, injections, whatever, and being in hell, well, eating gluten free looks more like vacations!!
The transition went very smooth for us. Daughter continues to do sports, she did canoeing yesterday for about 4 hours, then came home cycling + train, then still did her dance course in the evening: she was exhausted, but no muscle cramps!
How can gluten cause muscle cramps, I wonder....
Posts: 6200 | From Brussels | Registered: Oct 2007
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Bcb ..the parasite tx of pin x may not be enough ..ascaris travels and get ingested and cycle continues. .she may need ivermectin or strong herbs and dr k treats for 18 months ..
the lining of the gut is likely comprimised and i became allergic to chicken and salad greens ...was very strange ..some one on hw said the got their gut back after 2 years
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic