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

? Gluten Allergy

Raynee

Recommended Posts

Raynee Rookie
Raynee
Posted

Hello everyone,

I just wanted to get some opinions and feedback on my symptoms. I see a gastroenterologist in two weeks. Have seen one in the past but gave up. I don't know if I have this condition so I am asking opinions who those who do. I have had severe bloating of my stomach for about seven years now. I have tried every medication known with no help. I look six months pregnant when I relax my stomach. It feels like someone is inside pushing it out. At night I have terrible gas. This is constant. I get no relief whatsoever. I hold my stomach all day. I have noticed carbs seem to make it even worse. And beer. Also when I drink a few sips of a beer my neck up and ears turn purple/red and burn like crazy. I have occasional diarrhea but not much constipation. I also have eczema for about seven years now and I am infertile and the doctors have no idea why. It literally feels like i swallowed a turkey. I have muscle weakness, headaches, and god awful fatigue for years. I got so desperate at one point four years ago I had liposuction of my abdomen. I am 130 pounds and can gain 5-6 pounds in a couple of days, and it is not water, it is belly.

Any feedback would be greatly appreciated.

Desperate for answers.

Renee

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

Celiac.com Sponsor (A8-M):


Mother of Jibril Enthusiast
Mother of Jibril
Posted

Hi Renee,

Have you ever had a celiac panel (blood test)? Celiac disease is an autoimmune disorder... not an allergy... so you need to make sure you're getting the right kind of tests. Also, have you tried the gluten-free diet yet? If not, keep eating gluten until the testing is complete!! Otherwise, you could easily get a false negative. Some people have celiac disease without any symptoms at all, but with your history of bloating, fatigue, and infertility I think it's definitely worth checking out.

Good luck!

slimchance Newbie
slimchance
Posted

I too have had an eczema for a long while which is why I decided to go to a dermatologist a few years ago. After a gauntlet of tests, (Thankfully I had Insurance, they were nearly $20,000 in total) She mentioned that I was allergic to gluten. I tried quitting, and it totally sucks sucks sucks............... But I feel 200% better because of my new diet. Life isnt nearly as hard to live once you realize there are ways around everything.

If you live in an area where there is an In N out burger, you can get a burger with no bun and no sauce, and they dont cook anything in the fryers other than fries, so youre safe there. Thats just one example.

Also, Open Original Shared Link has a great bread mix that is not only comparable to regular bread, but in my experience, is better tasting.. Don't ever go buy that horrible tapioca or rice flour bread at the grocery store. It will just be depressing if you do.

I am still quite new to this and the only thing I can say to help cope with the complete life change is to find a way to keep yourself in good spirits about it. At least you dont have AIDS, right?

ohmyheavenwhy Newbie
ohmyheavenwhy
Posted
Also, Open Original Shared Link has a great bread mix that is not only comparable to regular bread, but in my experience, is better tasting.. Don't ever go buy that horrible tapioca or rice flour bread at the grocery store. It will just be depressing if you do.

amen to that.

eating gluten-free has made such a huge difference for me, it's SO worth it--given your symptoms i would definitely try it! i dealt with a lot of fatigue and most of it disappeared once i stopped eating gluten. that alone was worth it, but the grocery list (literally i wrote them all out) of other symptoms i was experiencing due to gluten intolerance assure me that i never again want to touch that stuff.

if you don't feel like your visit with the gastroenterologist goes anywhere, try cutting gluten out of your diet! one way or another i hope you can get some answers.

Raynee Rookie
Raynee
Posted
  • Author
Hello everyone,

I just wanted to get some opinions and feedback on my symptoms. I see a gastroenterologist in two weeks. Have seen one in the past but gave up. I don't know if I have this condition so I am asking opinions who those who do. I have had severe bloating of my stomach for about seven years now. I have tried every medication known with no help. I look six months pregnant when I relax my stomach. It feels like someone is inside pushing it out. At night I have terrible gas. This is constant. I get no relief whatsoever. I hold my stomach all day. I have noticed carbs seem to make it even worse. And beer. Also when I drink a few sips of a beer my neck up and ears turn purple/red and burn like crazy. I have occasional diarrhea but not much constipation. I also have eczema for about seven years now and I am infertile and the doctors have no idea why. It literally feels like i swallowed a turkey. I have muscle weakness, headaches, and god awful fatigue for years. I got so desperate at one point four years ago I had liposuction of my abdomen. I am 130 pounds and can gain 5-6 pounds in a couple of days, and it is not water, it is belly.

Any feedback would be greatly appreciated.

Desperate for answers.

Renee

Thank you for your replies. I have never had the celiac test and I am hoping this doctor will run the test. I will insist actually. I will continue the gluten until I see him because I want him to see my stomach as it has been for many years. I am not going to lie, I am a bit anxious as I don't want to have this, however, I feel like there is hope to feel better if I do and it would explain a lot of weirdo symptoms in my life. Has anyone out there ever had any neurological problems from this. About ten years ago I was dx with having mini strokes. My face was paralyzed, fatigue, right sided weakness, etc. MRI and all tests negative. That is better now thank god!

slimchance Newbie
slimchance
Posted
I will continue the gluten ....

If I were you, I would stop with the gluten. The doctor will see the effects of it and you will be better off the sooner you get off of it. I know its hard, but it has to be done. If youre not going to heed my warning and those of others, ENJOY THE HELL OUT OF IT WHILE YOU CAN!!!!!!!!!!!!!!!!!!1

ravenwoodglass Mentor
ravenwoodglass
Posted
If I were you, I would stop with the gluten. The doctor will see the effects of it and you will be better off the sooner you get off of it. I know its hard, but it has to be done. If youre not going to heed my warning and those of others, ENJOY THE HELL OUT OF IT WHILE YOU CAN!!!!!!!!!!!!!!!!!!1

She needs to stay on gluten until all the testing for celiac is done. Otherwise she will have a false negative result on the tests. After that testing is done I agree fully that she should give the diet a good strict try for a bit to see if it helps no matter what the test results are.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748
    bailey1023
    Newest Member
    bailey1023
    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

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      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
      Inconclusive results

      By Scott Adams · Posted

      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
      Medication

      By Scott Adams · Posted

      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
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.