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Is This Gluten Intolerance? Where To Go From Here?

marijoy

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marijoy Newbie
marijoy
Posted

Hello,

I have been reading through this board, and I think I may have a gluten intolerance. These are my symptoms:

- thryoid nodule that keeps getting larger - TSH is normal

- hair loss

- painful pimples on scalp

- acne

- cramps, bloating, diarrhea, constipation, gas

- low albumin in blood (low protein)

- low vitamin D

- slightly high liver enzymes

- high calcium

- low iron

- extreme fatigue

Do you think this could be gluten intolerance? If so, what do I do from here? What tests do I need done? What supplements to take? I was thinking that I would just start on a gluten free diet and see what happens. However, after going to whole foods last night I have changed my mind. I have no idea what products are gluten free. Do all foods have to be bought from a specialty store? Everything was so expensive! I would like to start the diet, but have no idea what is okay to eat!

Thanks for helping a newbie!!!

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The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hello,

I have been reading through this board, and I think I may have a gluten intolerance. These are my symptoms:

- thryoid nodule that keeps getting larger - TSH is normal

- hair loss

- painful pimples on scalp

- acne

- cramps, bloating, diarrhea, constipation, gas

- low albumin in blood (low protein)

- low vitamin D

- slightly high liver enzymes

- high calcium

- low iron

- extreme fatigue

Do you think this could be gluten intolerance? If so, what do I do from here? What tests do I need done? What supplements to take? I was thinking that I would just start on a gluten free diet and see what happens. However, after going to whole foods last night I have changed my mind. I have no idea what products are gluten free. Do all foods have to be bought from a specialty store? Everything was so expensive! I would like to start the diet, but have no idea what is okay to eat!

Thanks for helping a newbie!!!

You don't really have to get anything at a specialty store if you're prepared to do nearly all your own cooking. Whole foods are the way to go, but you don't have to get them at Whole Foods. Meats, fruits and vegetables are inherently gluten-free. It's important to avoid marinades and sauces, because these often aren't. Rice and potatoes are gluten-free; while there is something called gluten in corn, it isn't the kind of gluten that causes problems for celiacs (or gluten intolerant people). What you're trying to avoid are wheat, barley, rye and oats. (Oats themselves are gluten-free, but are often cross-contaminated. Also some celiacs can't eat even the gluten-free ones; I apparently am one of those.) Wheat is easy to look out for, as it's a top 8 allergen and has to be listed on the label. The other three you have to read labels carefully for. Breakfast cereal is particularly tough; it's best to go with ones that are labeled gluten free (for example, most varieties of Chex).

Your symptoms mostly sound consistent with a gluten problem. Most of us have low calcium, rather than high, but symptoms vary greatly from person to person, so it certainly wouldn't rule anything out. I hope you'll give the diet a chance, and I hope it works for you. Good luck, and welcome to the board.

marijoy Newbie
marijoy
Posted
  • Author

Thanks for the response! I am currently waiting for my doctor to call me back with the results from my lab test. I am not sure if she checked for celiac disease, but I hope so.

I have been reading through the forums quite a lot in the past couple days and I now think my mom might have a gluten intolerance too. She is painfully skinny and can't gain weight no matter what she does. She also has bad osteoporosis (only 55), very high blood pressure that isn't responding to medications, diarrhea frequently, and thyroid issues earlier in life. It looks like these are all things that can be related. I am going to try and convince her to do the gluten free diet too.

ang1e0251 Contributor
ang1e0251
Posted

I would guess that if you didn't discuss the celiac blood work with your dr, he probably didn't order it. Call the office and find out. If not, go back and get it or ask that they run it with some of the blood they've already drawn. Do not start the diet if you want to be tested as it will throw the testing off. If you don't care about the testing, then start the diet right away. It's up to you. Plenty of us are self dx'd for various reasons and just jumped to the gluten-free diet. Either way is OK and we will support your decision.

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    • 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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      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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