How do you know if you are gluten sensitive? I know I am not celiac (at least not, yet. My mother is and I have the genes). I have had the special blood test and the endoscope.
My allergy tests showed me allergic to milk, eggs and some other items, but not to gluten. Energy testing (which I am not sold on completely) said I was gluten sensitive and the LLMD said it might also be a good idea to go gluten free.
Since going gluten free I have lost too much weight and my local doctors are very concerned. I do not feel any better not eating gluten.
So how does one know to be gluten free or not? I know gluten is not the best for you, but I have lost 30 pounds since getting lyme and most of that time I was gluten free and on antibiotics. When I added gluten back in I gained weight. Now, I am losing again.
Thanks for your discussion about this. Hiker53
Posted by Angelica (Member # 15601) on :
In my case it was obvious not that it showed up in testing but if I eat gluten I get colitis and if I do not eat it I don't.
Gluten can be hard on the spleen.
I also found out that I have other blood relatives that can not eat gluten.
Posted by Marz (Member # 3446) on :
Hiker, like you I have a gene from each of my parents for gluten sensitivity, but don't have celiac disease.
I had lost weight on flagyl and when I was put on a gluten free diet by LLMD, I kept getting thinner and thinner so I quit the diet.
I had a consult with a clinical nutritionist who is so up on the biochemistry of the human body and he recommended I continue eating gluten, but take enzymes to break it down.
He said he's seen patients who go gluten free, then become sensitive to other things.
I've been taking the enzymes and trying to eat gluten in moderation.
Gluten is a protein and if you do a search, it tells which enzymes work on gluten.
Posted by Cobweb (Member # 10053) on :
I haven't lost an OUNCE since going gluten free.In fact I have gained weight. It may be the UTZ potatoe chips( a gluten free product) Posted by knshore (Member # 13451) on :
I don't know whether I have Celiac or not, it looks like it, but we didn't scope me before I was gluten free.
I am severely gluten "sensitive." I think gluten isn't good for anyone, but some people are able to tolerate it.
I guess you could just take enzymes, but if you are gluten sensitive, you should really be totally gluten free.
How much fat were you eating when you went gluten free? Things like almond butter, etc. could help maintain your weight.
Posted by lymeout (Member # 8045) on :
There is a blood test that measures gliadin antibodies. You can be asymptomatic and have a gluten intolerance. But my doctor said that it can trigger inflammation. As a matter of fact, even the tiniest amount can do this, which is why it is recommended that you go on a gluten-free diet. I am trying it now.
The Zone Diet pretty much eliminates ALL grain and starch from the diet, and it is supposed to be good for you. I wish there could be some consensus on this whole nutrition thing. Most of my arguments with my daughter are over food! We are either riddled with guilt if we eat what we like, or we are miserable because we feel deprived! Can't win!
I would like to know more about the enzymes. I really think synergy is the key to it all. We need to know what works with what.
Posted by sixgoofykids (Member # 11141) on :
I used to be gluten sensitive and now am not after Lyme/bart treatment. Before I was like knshore where if I ate even a crumb, I'd get sick from it.
After I went a few months without getting sick from accidental gluten ingestion, I knew I was no longer intolerant and "tested" it by eating some. I had no reaction. Now I've been eating gluten for about a year with no problem after being gluten-free for two years.
There are still a lot of carbs you can eat while gluten-free, that and some fat may help you keep the weight on. If you just switched to meats and veggies, that could really cause weight loss. Posted by Marz (Member # 3446) on :
I did a little checking and found these two articles which might help.
You have to take the two enzymes EP-B2 and PEP together for it to work.
It sounds like the UK only makes it...??? I'll have to do more checking.
The ones my nutritionist has me on aren't these. He makes his own pharmacentical grade products. They have four different protease enzymes in them.
Posted by smiles132002 (Member # 7949) on :
It's not just glutin it's yeast, wheat, surgar, dairy. I have NEVER tested positive for celiac, but lyme causes an intolerance to this.
I just to get terrible stomach aches when I ate pasta or bread. I have never drank milk (even as a small baby), I have never liked cheese (no pizza, mac& cheese, grilled cheese), I hate eggs, and when I was about 10 I started getting sick when I would eat bread and pasted.
When I feel good, I can eat all those things, but if I am sick or herxing I don't bother because I will break out in hives or vomit or get horrible stomach ache.
You might also see your tongue with a whitish film or a chronic flem cough or weight gain/loss.
Posted by Keebler (Member # 12673) on :
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Rather than gluten-containing food, do you still loose weight on the non-gluten grains like millet, buckwheat, quinoa, rices ??
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I had a genetic test that shows probable celiac - about 90 + % likelihood.
the GI test I had done was a waste of time and money as one has to be on a high amount of wheat for a couple weeks for the test to see anything - they did not tell me that. I had been mostly gluten free for a long time before testing.
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So, it's probable that I am celiac, but there's that little voice that sometimes says "they are not sure."
I've been mostly GF for a decade. Earlier this week, while housesitting, I broke into a package of their whole wheat crackers. I was just too tired to cook and had forgotten my own GF snacks.
Two days later I had one of the worst seizures in years (triggered by a loud voice on the phone). I know I have many complex factors going on but gluten does seem to affect my brain. This has happened before when I thought I'd just try a piece of bread for the first time in a year or two.
There are some people who have no stomach problems at all but gluten still affects their brain. And, I just found an abstract that shows gluten can affect auditory functions. Oh, Yippee !
Pain, brain-fog . . . there are other signs of gluten/celiac connections. The thing is that these can occur in any number of other conditions so the connection is not easily made.
I was just looking at some of this - funny timing of your post. Here's just a snippet of what I found.
I'm interested to read more about the enzymes (MARZ' post above). I think it all comes down to the precise enzymes.
Cognitive impairment and celiac disease. Hu WT, Murray JA, Greenaway MC, Parisi JE, Josephs KA.
Departments of Neurology, Internal Medicine, Psychology, and Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minn, USA.
EXCERPT:
. . . CONCLUSIONS: A possible association exists between progressive cognitive impairment and celiac disease, given the temporal relationship and the relatively high frequency of ataxia and peripheral neuropathy, more commonly associated with celiac disease.
Given the impact for potential treatment of similar cases, recognition of this possible association and additional studies are warranted.
- full abstract at link.
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And, I like to leave on a happy note: A few years ago I came across a guy who had had severe celiac. He had been treated by a ND for a particular treatment and he was literally cured of it.
He was sitting on the phone, eating a bagel - a usual thing - for him. I was very impressed with his history of problems and then with his ability to do fine with gluten.
I will try to remember how to contact him and will PM you if that pans out. I may ask him again, how's he doing.
I have to add, though, that if I were able to "do" gluten, I'd still just save my cards for the very special of special items.
Cheerio !
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Posted by nyjohn (Member # 15361) on :
one way to check is to eat gluten foods and see if you get gassy throughout the night and in the morning. an intolerance can also trigger loose stools after a few days of eating gluten.
Posted by hiker53 (Member # 6046) on :
Thanks for all of the information. Part of the problem is my allergies to eggs, dairy, casein, almonds, pineapple, cherries, ginger. The list seems to grow every day.
I think I have a lack of caloric intake even though I eat like a pig.
I know my GI doc this week will say it is ok for me to eat gluten, since my blood tests and endoscope tests are negative. My allergy testing at Meridian labs showed no allergy to gluten or gliadin.
I have actually had a increase in my neuro symptoms since being on the diet. I did the diet for awhile and then quit after a few years and then started in April again. I have more myoclonus seizures now and more tingling in my arm and foot. Probably just co-incidence.
I can live with a gluten free diet, it's the dairy (ice-cream and cheese) and eggs I really want back in my diet.
Time to go eata snack--goat's cheese on gluten free crackers. Hiker53
Posted by Keebler (Member # 12673) on :
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Hiker,
I'm a little lost - did you say you have more seizures ON the GF diet or OFF the GF diet ?
In either case, sorry to hear that. myoclonic is the type I see, too.
when you speak of the diet, on wonder if you mean the GF diet or a (lyme or candida) diet.
and for the endoscope tests - had you eaten gluten for some time prior to the tests ? For some it can make a difference. I assume you've got a great doctor for celiac issues who would know about the particulars, though.
Still - there is hope for more freedom to come. Enzymes - I think - if we could just have the perfect enzymatic terrain all would be well with the world.
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Posted by hiker53 (Member # 6046) on :
Keebler,
I have had more seziures since being on the gluten free diet. I am not taking antibiotics right now.
Tried some deseret biologicals homeopathy for a little bit and it brought out the bart rash and headaches. Afraid to do it too long as too much homeopathy can bring on true symptoms and not just a herx. I might have done it too long and that is why my seizures and tingling have increased or I might just be getting worse.
I just can't tolerate antibiotics. Sure hope Dr. W treatments work for people, so I can try those in Germany.
I will speak to my GI doc Tuesday. The GI doc from Mayo responded to my query (I had seen him before I knew I had lyme and he told me to go gluten free as my symptoms could be from gluten). Since my tests have been negative he said I could discuss with my doctor what is best.
I may try to stay mainly gluten free but when I go out eat some gluten and take some enzymes. I can make smoothies out of coconut milk and other things that do not have eggs or dairy or almonds which I am allergic to, but that is hard to do once I head back to teaching in midAugust.
No blender at school and no office to put one in.
Hiker53
Posted by Keebler (Member # 12673) on :
Hiker,
thanks for the reply.
It's truly a puzzle.
I wonder if, since you have more seizures on the GF diet, if when off of it the bread helps your blood sugar not drop so much. Low blood sugar can trigger seizures, too.
I wonder if Ezekial bread would be a safer bet as it's made from sprouted grains, not mature grain (although some of their products contain barley malt, therefore, gluten).
Also, while spelt has about the same amount of gluten as wheat, it is a more ancient cousin and has much nutrition.
A friend of mine can eat breads in Europe but not from the U.S. - so it may not always be the wheat/gluten but how it's grown and processed, too.
Marz' enzymes look promising.
One thing that helps me when I travel is to get a ground up rice cereal and add boiling water to it. I can add stevia and cinnamon or lunch herbs such as thyme to it - and mix in veggies.
That might be something you can do at school, if you have time and space.
The coconut milk will add weight - I was making some soy/coconut milk/stevia tapioca for a while and a few pounds came (seemingly) out of nowhere.
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Posted by Piegirl (Member # 14786) on :
Due to having bad stomach problems I had an endoscopy and the blood test for celiac a few years ago. Both were negative.
However, I did feel better not eatting gluten. So, I was confused.
I went to a Naturopath who had me do a stool test through a lab called Enterolab in Dallas. It is a highly sensitive test that picks up on any sensitivities that you may have to gluten.
They can also test for yeast, egg, milk, and soy sensitivities.
I showed slightly intolerant to gluten so I don't eat it along with dairy (which affects me also). I do not believe I have true celiac but, just sensitivities due to how ill I am/was.
When I do eat gluten I get increased brain fog, headaches, acid reflux, and nausea.
The health food stores in my city also highly recommend this test to any customers that suspect celiac/gluten intolerance.
Also, the test is done at home and you send it in the mail. They have a special setup for this. Plus, you don't need a doctor to do it.
Mary
Posted by not so sublime lyme (Member # 15185) on :
Cobweb,
Thanks! I didn't know about UTZ--now I know what to do for my chip craving.
Posted by Blackstone (Member # 9453) on :
Only my personal experiences but... I don't seem to have any food allergies or sensitivities to anything. There's no particular food product that makes me feel better if I'm not eating it. I once went on an allergy elimination diet, and we didn't discover anything adding items back in. I pretty much ate nothing but chicken and fish with nothing on them, and celery for a couple of weeks.
If you can find an herbalist/nutritionist, try the elimination diet perhaps?
Posted by Parisa (Member # 10526) on :
When you went gluten free did you substitute the missing gluten (ie carbs) with something else? If you decided to stop eating bread and didn't replace it with another carb that's the reason you lost weight.
My husband is gluten free. He does not have obvious stomach problems from gluten but did test positive at Enterolab for sensitivity.
Two years into the diet and he says that dairy and beans no longer give him problems so I think he's making progress at healing his gut.
Also, my husband attempted a candida diet (basically no carbs) a couple of years ago and it's definitely the wrong tactic for his metabolism/condition. He just wastes away. So carbs are very important for him - gluten free ones that is.
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