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Should I Start Eating Gluten Again?

abbyryd

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abbyryd Newbie
abbyryd
Posted

Okay so I'm a twenty year old college student. About a year ago, I started having inexplicable stomach pain and pretty consistent diarrhea (gross). For months I just kind of dealt with it not really acknowledging that it was abnormal. At some point, I realized that my symptoms were pretty consistent with Celiac disease and gluten intolerance, and because I ate bread and other gluten-filled products pretty much every day, I felt like I had found the source of the problem. I decided to stop eating it for a trial period just to see how it went. Almost immediately (within a few days) I felt better. I didn't have the stomach pain anymore and the diarrhea all but went away. I have felt better since cutting gluten out of my diet, but I haven't been officially diagnosed with anything. All of the literature says you should be eating gluten for four weeks before your test to avoid inaccurate results. The thought of eating gluten for a full four weeks is terrifying - the gastrointestinal horror!

So my question is the following: Should I keep doing what I'm doing, or should I bite the bullet and start consuming gluten again? Has anyone had the same problem?

Thanks a lot for any information you guys can give :).

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eatmeat4good Enthusiast
eatmeat4good
Posted

Some Possible outcomes are:

1. Many people try to return to eating gluten for 3 months and find they simply cannot handle the symptoms. Result: They go gluten free and forget the testing.

2. Other people make themselves handle eating gluten for 3 months and feel lousy the whole time and still test negative. Result: They go gluten free and try to forget the lousy months of glutening.

3. Some people test positive and then are told by their Dr. to go gluten free. Result: They go gluten free and try to forget that they already knew that in the first place.

A lot of people have gluten intolerance and won't be able to test positive....but they won't be able to handle eating gluten either.

Eating something with gluten in it is enough to make me very ill and I don't need the Dr. to tell me to stop eating it.

When I asked the Dr. about testing he said, Why? So I can tell you to stop eating gluten? We already know it makes you sick. At the time I was mad, but now I see that he was right.

I'm not trying to tell you what to do, just giving you something to consider.

mushroom Proficient
mushroom
Posted

As eatmeat4good says, you can eat gluten for the recommended two months at the rate of 3-4 slices of bread a day, and still test negative on blood and biopsy, because you have a different form of gluten intolerance than celiac disease, and they don't have any way of testing for this yet. So it is entirely up to you if you want to torture yourself for that period of time to attempt to get a label which may not apply to you :P A diagnosis is nice work if you can get it, without causing yourself too much harm, and if you need it to convince yourself that this is the way you must eat, or if you need it for some other unspecified reason, but if you know that gluten makes you sick, and you are going to eat gluten-free anyway, why bother? That is not to say that gluten is definitely the cause of your problems, but if they do resolve gluten free, then you have your answer. :) I would never go back to eating gluten to get tested. Just as I would never knowingly eat the other things that I don't tolerate. Well, actually I did that last week (because hubs had prepared a special dinner) and boy did I pay the price for eating it.

katiekay Explorer
katiekay
Posted

to abbyryd - thank you for posting this question.

to mushroom and eatmeat4good - thank you for your answers!!! It's funny because I know that I want to go gluten free but for some reason I have felt like I couldn't without a test result. Each time I see answers like these it gets me going in the right direction!! I am curious about the results from the blood test that I took today but I no longer feel like I need the test results. I'm going to immediately go gluten free and get rid of the itchy skin, headaches, tiredness, stomache stuff etc. thanks!

Kre8sioN Newbie
Kre8sioN
Posted

I'm so confused, I go for a test @ 7am tomorrow, not even sure what its for (I'll ask when I get there). I told my doctor I went gluten free and most of my symptoms went away. Gave me another blood test, cant read his writing but it says gluten panel something. Is this a test for the gene or intolerance? as I stopped taking in gluten 3 weeks ago. BTW great post eatmeat4good! :) And I need to ask doc more questions I guess. New here so I guess its time to log in whats going on In my signature....As for taking in gluten again? UGH.

abbyryd Newbie
abbyryd
Posted
  • Author

Thanks so much for your input, everybody :). I've been worrying about this for months but now I feel better!

katiekay Explorer
katiekay
Posted

eee gads... A new day and I'm once again unsure what I'm going to do. I want to be gluten free but I wish I had a diagnosis.

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abbyryd Newbie
abbyryd
Posted
  • Author

Katiekay, just do it to see if it makes you feel better :). It's really not that difficult - there are tons of "normal" foods you can still eat that don't even have to be made specifically gluten free. Just always check the label! Rice, salad, Chick fil A fries, tortilla chips, steak, tacos, chocolate, potato chips, cheese...

katiekay Explorer
katiekay
Posted

Today we are starting gluten free.

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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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