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I've Been Told Diff Things By Diff Doctors!


willamina

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willamina Apprentice

What do I do?

What are the NORMAL symptoms of gluten intolerance?


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tarnalberry Community Regular

Lol! That's a question without an answer. Or rather, it has a really long answer with a lot of different things. Not to mention that a LOT of celiacs do not have normal symptoms. (I didn't.) While weight loss and diarreah and abdominal pain are listed as common symptoms, some people have no physical symptoms and just mental ones (brain fog, irritability, etc), and some people have the opposite symptoms (weight gain, constipation, etc).

Have you been tested? If so, what tests? Have you tried going gluten-free? Did that make any difference? Do you have family members with celiac or IBS or other digestive issues?

Guest jhmom

There are many symptoms of Celiac Disease, in fact over 200 of them. Here is a link to a list of symptoms located on this website click Here for the list. There are also other symptoms that are not listed, each person is different. Some people have this diease and severe symptoms and some don't have any GI problems at all, maybe just anemia.

If you don't mind maybe you should give us a little more info about yourself for example, have you been tested, what kind of symptoms are you experiencing, if any?

I hope this link helps....

YankeeDB Contributor

I wonder if all the different symptoms related to WHICH part of the small intestine is damaged. Perhaps different sections absorb different nutrients and that is a factor. My primary debilitating symptom was ever-increasing fatigue. A blood test showed B12 deficiency (but not iron deficiency) and I understand B12 is absorbed in the lower intestine (ileum). I also had mild-moderate steatorrhea but otherwise OK bowels. Oh, I think I had DH but that was "cured" symptomatically with cortizone cream and I regarded it as so trivial that I never mentioned it to my doctor.

The never-ending saga......

seeking-wholeness Explorer

YankeeDB,

Vitamin B-12 can only be absorbed at all if sufficient levels of "intrinsic factor" are present in the stomach to convert it into a form that is usable by the body. If B-12 supplementation is necessary, methylcobalamin is preferred because it is already the "active" form of the vitamin. Cyanocobalamin, while more common and less expensive, has to be converted by the body and is useless if the conversion mechanism is defective. I just thought you might find this interesting. I hope you're doing well!

YankeeDB Contributor

Sarah,

Thanks so much for your informed response. My intrinsic factor was OK, according to my doctor. Since the b12 problem was discovered, first I received monthly shots (1000mcg) and now I'm taking the sublingual form (1000mcg daily) of the supplement to bypass my battle-weary digestive track. My B12 levels are good now and I've used both methyl- and cyano- forms at different times so at least something is going right.

I'm still wondering if pancreatic insufficiency (another potential factor underlying b12 problems) may be at issue.

Quite a tangled (but interesting) web.

I'm just on the first steps of gluten freedom and have lots to learn and figure out.

Ann

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      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
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      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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