Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Why Is Wheat Doing This To Me If I Do Not Have Celiac And Am Not Allergic To It?
0

3 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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
http://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

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

 

 

1

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,132
    • Total Posts
      919,526
  • Topics

  • Posts

    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    jen4az
    Joined