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I Think It Might Be Gluten!

MEH

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MEH Apprentice
MEH
Posted

Hello All,

For the first time in 48 years, I think I may have discovered what is wrong with me! I'll keep it short, but please let me know if any of these symptoms sound familiar?

*Didn't really feel well growing up. Fatigue, depression, thin, late puberty. Just learned to live with it.

*B-12 Deficiency discovered in my 30's. MS-like symptoms for many years. Sensitivity to many things, including over the counter drugs and pharmeceuiticals. Insomnia began. General feeling of fatigue, "not feeling well," hypo-glycemia at times, struggled with weight at times (too thin) although now in my 40's I am really gaining weight---too much in fact. Often "foggy brained", poor memory..alternating episodes of this. Loose or "mushy" stools (sorry!) Diagnosed as allergic to pollen, dust and mold in my 40's.

*Here's how I began wondering/pinpointing gluten: Two things happened. I went on an international trip and had no bread for two weeks and was eating mostly vegetables, some meat and drinking a lot of water and I felt fantastic! There wasn't a lot of bread offered there but an abundance of fresh veggies.

And recently, on an empty stomach, I stopped and had a piece of pizza and immediately felt horrible for the rest of the day. The fog brain started. Stomach hurt. When I thought about it, this often happened when I ate pizza, especially on an empty stomach. And when I thought about it some more, I realized that in my own way, I tended to avoid bread quite often--almost naturally---like when I'd go out to dinner, I wouldn't indulge in the bread basket. But it wasn't a "conscious" decision. Was constantly gassy for a few months, and one day made a sandwich at home and noticed the gas started right away.

My father had a lot of weird allergies. Wouldn't suprise me that I followed suit.

Notice that I have a lot of sensitivities-or an over reactive central nervous system. Sensitive to light, sound, drugs, alcohol, sleep, stress, etc.

As you can see, it might be hard for me to pinpoint gluten, and I'm not certain it is the cause of all of my problems.....but I'm really starting to wonder and investigate.

Any thoughts/ideas you can throw out there would be most appreciated!

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Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum.

It sounds like you could have celiac or a gluten intolerance. Have you had any testing for celiac? If you are planning to, make sure you are eating plenty of gluten filled foods so you can get the best possible results. If you don't feel you could eat that much you can always just start gluten-free and see if your symptoms start to go away. A lot of people feel that is the best test anyway. Many Dr.s will not diagnose you based on diet change alone, so you have to do what you feel is best for yourself.

MEH Apprentice
MEH
Posted
  • Author

Thanks for answering!

I forgot to mention that I have asthma as well and acid reflux. Also, occassional bladder problems (UTI-like problems). What a mess I am! :)

I'm trying to stay away from gluten and see if I feel better...which I do already. If I suspect this is it, then I will go to my doctor, start eating gluten again and get tested.

Have a great day..

cahill Collaborator
cahill
Posted

Thanks for answering!

I forgot to mention that I have asthma as well and acid reflux. Also, occassional bladder problems (UTI-like problems). What a mess I am! :)

I'm trying to stay away from gluten and see if I feel better...which I do already. If I suspect this is it, then I will go to my doctor, start eating gluten again and get tested.

Have a great day..

May I suggest if your going to get tested, Keep eating gluten and get tested now ,before going gluten free.

mushroom Proficient
mushroom
Posted

May I suggest if your going to get tested, Keep eating gluten and get tested now ,before going gluten free.

I couldn't agree with this more strongly. People don't realize that if you stop eating gluten and then resume it, for most of us the reaction is much stronger, to the point of being totally intolerable for most, and they stop eating gluten before they have been on it long enough to be tested. It's not like you can just gluten up the day before testing :( - you have to go back on for two to three months at the equivalent of three to four slices of bread a day to make sufficient antibodies to be tested in the bloodstream, and to redestroy your partially healed small intestine for the biopsies to be positive. It is not an easy proposition. Much better to get the testing now :)

Igg postive Rookie
Igg postive
Posted

Wow, I just found out I might be Celiac too. Funny thing is my doctor figured it out. I have been complaining of stomach and intestinal problems for years. My doctor asked me questions that I didn't put together now as Celiac dianosis questions. He gave me the Celiac panel blood tests. One came back positive. So I am so glad he took the time on me. I think I was out of Ideas. Hope you can get come Celiac test done.

eatmeat4good Enthusiast
eatmeat4good
Posted

I didn't test, but wanted to let you know that all of your symptoms matched mine including UTI spasms and ALL have resolved on being gluten free.

I hope this is true for you as well.

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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
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      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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