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

Why Is Wheat Doing This To Me If I Do Not Have Celiac And Am Not Allergic To It?

livelaughlove3885

Recommended Posts

livelaughlove3885 Rookie
livelaughlove3885
Posted

Hi All! I think I accidentally got glutened last night. I can't order out from anywhere (and should have learned my lesson by now... but when you work all day, come home and are starving... and didn't have time to food shop and prepare ahead because busy with children... sometimes you just think I need to eat... i'll take my chances). So i ordered fries from a pizza shop. I very well knew they probably had cross contamination. Well, I haven't had any gluten/wheat since about 2 weeks ago and my rash went completely away. Also, I haven't used any meds or creams because i wanted to see if it was wheat that was causing it. The creams were not working, so i stopped using them the same day i stopped eating wheat. I stopped eating wheat and the rash went away. Anyway, about an hour after i ate the fries i got so itchy. I went upstairs and looked in the mirror and hot red blotches on my face and other parts of my body. They were not raised hives or anything, just these red spots that felt hot, not hot to the touch, but to me under the skin they felt like they were burning. This morning i just woke up and I am fine. This is very frustrating for me because I do not have celiac disease, yet my small bowel ( intraepithelial lymphocytosis/mild crypt hyperplasia) was Marsh 2 and looked like celiac so they tested bloodwork and i am negative DQ2 and DQ8. Also, i never had a skin biopsy... the dermatologist just looked at me and said folliculitis (it was on my face, chest, upper back, top of shoulders. It did not look infected, just like these raised circular bumps with white fluid in them or something. They didn't bother me, i had them for about 6 months, until the end of the 6 month period they started to get itchy.). Also, I had allergy testing, and I am negative IgE for wheat. But when i remove wheat, all my problems go away. I am convinced that it is not the gluten but some other protein in wheat that gives me problems. Anyone else out there like me? Why does wheat cause inflammatory reactions (but that are not allergy or autoimmune related) in people like me? It really sucks because you can't test for it. All you can do is do an elimination diet to figure out what ails you. And no one believes you.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi,

 

You may have DH (dermatitis herpetiformis) starting.  DH is diagnosed by taking a small biopsy sample of skin next to (but not in) the lesion.  They check it for antibodies.  People with DH seem to have some problems being diagnosed at times.  They don't always show the same blood antibodies as other celiacs for some reason.  There is more info in the DH section of the forum.  If you are diagnosed with DH then you have celiac disease, but some dermatologists are not familiar with the disease and testing for it.

 

There is also NCGI, which has similar symptoms to celiac disease but no tests will detect it right now.  It sounds more like DH to me tho.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

 

squirmingitch Veteran
squirmingitch
Posted

It doesn't sound like dh. However, I won't say it isn't pre dh. DH is insanely itchy --- absolutely drive you nuts, make you want to peel your skin off with a knife, insanely itchy 24/7. And dh doesn't present & then the next morning you are fine. What's happening to you doesn't add up as dh; at least not at this point in time. What is pre dh & could it be that? Quite frankly I can't say. There are no med texts or studies that I have found on the subject of pre dh.

GFinDC is right though. Ppl with dh test false neg. on the celiac blood panel 60% of the time. Also, DQ2 & DQ8 are not the only celiac genes as some studies have shown. They are by far, the most common but there are studies out there that have identified other genes, mostly ppl in other countries, or from other ethnic backgrounds.

One thing is certain though --- you have a problem with gluten. We have a saying:

If it makes you sick, don't eat it. 

 

I wish I had better answers for you livelaughlove but I don't. And I wouldn't be so quick to think the problem lies with some other protein in wheat. Tests can be mixed up, screwed up, performed incorrectly, ordered incompletely, interpreted incorrectly, & are not reliable 100% of the time. You are having a reaction to wheat ---- period. Your body is verifying that & that counts more than all the tests in the world.

Archived

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

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


  • Member Statistics

    • Total Members
      132,116
    • Most Online (within 30 mins)
      7,748
    Mary Pack
    Newest Member
    Mary Pack
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle??  Thank you 
    • Colleen H
      Heat intolerant... Yikes

      By Colleen H · Posted

      Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔  Winter is here.  I had to lower my thermostat because I couldn't take that hot air feeling 😔  Hopefully it goes away soon     
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
×
×
  • 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.