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I've Been Told Diff Things By Diff Doctors!

willamina

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willamina Apprentice
willamina
Posted

What do I do?

What are the NORMAL symptoms of gluten intolerance?

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tarnalberry Community Regular
tarnalberry
Posted

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
Guest jhmom
Posted

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
YankeeDB
Posted

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
seeking-wholeness
Posted

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
YankeeDB
Posted

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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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