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Symptoms Get Worse Before They Get Better (gluten-free Diet)

Tim86

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Tim86 Apprentice
Tim86
Posted

I've been trying a gluten free diet for about 22 days now, and it seems like I feel worse than before. I'm hoping to relieve so-called IBS problems. In the past 22 days, I've had more abdominal cramping, about the same amount of diarrhea, and more nausea (which I rarely had before).

Here are my theories of what could be happening:

  • Maybe I coincidentally acquired some type of infection or parasite about 3 weeks ago, and haven't recovered yet (Salmonella, giardia, etc.)
  • Maybe my digestive system is trying to adjust to the new diet.
  • Maybe something specific in my new diet is irritating me. (I'm eating more tuna & salmon)
  • Maybe I'm still getting some gluten accidentally (but I don't see how this would make it worse...it should at least be no worse than before)

Any other ideas? Has anyone else has this happen, before it started to get better?

By the way, I tested negative for Celiac: Link to my test results discussion

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Tim86 Apprentice
Tim86
Posted
  • Author

C'mon people. How can over 90 people read this post, and not even one person has replied? I need your help! I'm about ready to give up on this gluten-free diet, so I need some answers to help me keep going.

ang1e0251 Contributor
ang1e0251
Posted

I've been trying a gluten free diet for about 22 days now, and it seems like I feel worse than before. I'm hoping to relieve so-called IBS problems. In the past 22 days, I've had more abdominal cramping, about the same amount of diarrhea, and more nausea (which I rarely had before).

Are you eating dairy? Many of us cannot tolerate it in the beginning and I, for one, would have your symptoms if I were having dairy.

[*]Maybe I coincidentally acquired some type of infection or parasite about 3 weeks ago, and haven't recovered yet (Salmonella, giardia, etc.)

That's a possiblilty but an infection usually would have run its course by now.

[*]Maybe my digestive system is trying to adjust to the new diet.

Also a possibility. It does take time and you haven't been on the diet long.

[*]Maybe something specific in my new diet is irritating me. (I'm eating more tuna & salmon)

That's a strong possibility. A food journal is helpful here. It sounds simplistic but it really is an eye opener escpecially is your in some kind of denial about a favorite food. You don't describe the rest of your diet but if you would maybe something will jump out.

[*]Maybe I'm still getting some gluten accidentally (but I don't see how this would make it worse...it should at least be no worse than before)

Another good one. Again if you list what you are ingesting, someone might see a red flag.

Any other ideas? Has anyone else has this happen, before it started to get better?

So many have written having the same experience. I'm sure you can find many examples in these files. Especially those who go through withdrawals, it can be a tough transition.

Give some more info and we'll see if we can help in any way. In the meantime, keep that food journal, note your symptoms and search all your food, drink and supplements again.

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    • 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

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      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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