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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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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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