Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Feeling confused about the problem


kimkelb89

Recommended Posts

kimkelb89 Newbie

Hello,

I'm hoping some of you can provide me with some insight here. I don't always react to gluten but I do enough of the time to give me pause.

Several years ago I had migraine headaches almost daily. I went on a diet for weight loss but it turned out that the migraines went away within 3 days. I looked at the ingredients of the diet products and the only thing I could figure was that all the products were gluten-free/almost gluten-free.

After being on the diet for a week and a half, I ate one slice of white bread. Half an hour later, I felt like someone took a sledgehammer to my head.

I went gluten free for 2 months. Tried to reintroduce it and it didn't work. Tried again after 2 months and for some reason, I didn't have a reaction again. And the migraines never returned.

Fast forward to now and I've been eating gluten since then. I had gastro issues on and off for years (gas, diarrhea, stomach pain, nausea) but they got much worse this past year. So I looked up the symptoms of gluten intolerance and celiac and I have all of them. The only one that didn't fit for celiac was that I've always been heavy, although I've read some people can still be heavy and have celiac.

Other symptoms I've had include stomach pain, fogginess, vomiting, constipation. I also have severe depression which I read can be linked to gluten either because of celiac or even IBS. I read that in studies they found that people with depression and IBS get better not eating gluten anymore, even if they don't have celiac. 

I went gluten free again for about 2 weeks. Two days ago, I ate a few mini donuts and couldn't eat all day after that. The pain in my stomach was horrible, just under my breasts. Yesterday, after eating half a frozen dinner that was a breaded product, I threw up twice and crawled into bed for several hours. My head was foggy and I felt like I was drugged. My limbs felt heavy. I had knee pain really bad. No injury there but the ligaments are tight and sore sometimes. Just never that bad before.

At lunch today, I ate three bites of a turkey sandwich. I almost threw up. I stopped eating it. For dinner, I ate cheesy bread from dominos. The only reaction was my knee started to hurt again but not nearly as bad as yesterday.

I see my doc for bloodwork in a few weeks and want to ask for the celiac test.

I ate gluten products 4 times over the last 2 week, once being today. Yesterday was the worst reaction. I was trying to narrow it down and everything that has caused a bad reaction has gluten. I've been eating dairy, eggs, and nuts but subtracted just gluten and had no problems. When I reintroduce bread products and stuff with gluten, I feel awful. But it doesn't happen every time.

It seems that when I reintroduce gluten it gets bad for a day or so. Then the symptoms ease up and I feel "normal." But I know that continuing to eat stuff with gluten in it will bring back the problems in the long term. Am I right in thinking that my body is literally trying to readjust from my abstinence from it and that's why I didn't react with dinner? Could it be something else that I'm eating that's the problem but am eliminating it and not realizing it when I go gluten free?

I know you guys aren't doctors. But tbh, I don't always trust doctors. Doctors have screwed me over in the past. I had a back condition that took over 2 years to treat due to several misdiagnoses and one doc almost killed me with a medicine interaction that she had every reason to catch. So I want to go into the doc appointment with as much info as possible. Thanks for taking the time to read all this. Sorry it's so longwinded but I don't really know anyone who can help.

 


 
 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Bellelovegood416 Newbie

I would definitely get tested but, for the test to come back right you have to be eating gluten for 12 weeks sometimes longer. Its called the gluten challenge. So sorry for what you have been dealing with I get it. 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.