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Disapointed...


Bigbread

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Bigbread Rookie

Damn, I


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mushroom Proficient

I am sorry you didn't get the definitive answer you wanted :( So many of us don't. But hey, if the gluten free diet makes you recover, then isn't that an answer in itself?? :) And whoever told you you could eat rye ought to be shot because the gluten in rye is the same as the gluten in wheat, as is the gluten in barley. Some celiacs tolerate certified gluten free oats; some do not.

If you have itching and burning and red patches that scar when they heal, that really does sound suspiciously like dermatitis herpetiformis, which is the skin form of celiac disease. People with DH will often test negative on the blood tests. The way to test for dermatitis herpetiformis is to find a dermatologist who is familiar with it, and who will take a biopsy adjacent to (not ON) the lesion, because the antibodies will be found in the adjacent tissue. A diagnosis of DH is a diagnosis of celiac. What have your doctors said about these red patches that scar? Do they have little blisters in them? Has anyone given you a diagnosis of what they are? Maybe that should be explored - it could give you your definitive answer.

Dixiebell Contributor

Hi Bigbread. Have you been to a derm. for a biopsy of that rash? Sounds like you could possibly have DH. If you have DH then you have celiac. If you can get a biopsy, they need to do it beside the break out not the break out itself.

Bigbread Rookie

Thanks for the posts.

My skin has been diagnosed with acne. It doesn't matter what my skin looks like Dermatologists(are the worst- been to 6) say all forms of skin problems are acne and food does not cause skin problems. Expect Exzema should not drink milk. They even refuse tests and wont' listen to other symptoms. Even when I got a bad reaction to homeopathic meds that caused my skin to scar I was told its acne. I honestly dont think they know what to do if the 3 acne meds dont work. Which I can tell you it doesn't on me.

The worst part is honelty the part where they dismiss me as if I'm a todler then I know they have no idea what they are looking at. I've been to 25 docters in total. So I am really tired. If this doesnt work I don't know what will.

mushroom Proficient

I know what you mean about dermatologists, they suck - I won't go back to mine; I hate that woman! She told me not to stop a medication I was taking for my RA even though it was making my psoriasis so much worse. Ha, what did she care? It was no skin off her nose, only mine :blink::lol:

Seriously, though, will no one take you seriously? Do you have someone who could go to the appointment with you and be an advocate for you, and not allow the doctor to be so dismissive? It is so ridiculous so say that food does not cause skin problems; almost all my skin problems (except the cancers :o ) have been caused by food. What a bunch of bunk. I think doctors become dermatologists because they aren't bright enough to be anything else :rolleyes: Okay, end of dermatologist rant.

Skylark Collaborator

If you go off gluten and all your problems go away, that will have to be a "diagnosis". Actually what you describe could be more allergic than celiac and the definitive test for allergies is elimination and challenge. Try the diet and see what happens. good luck!

cassP Contributor

i had Excema on my foot for 5 years- it itched so bad i would scratch till it bled.. it was horrific. it went away when i took wheat out of my diet a decade ago... not milk.

your diet can most definitely affect your skin. i hope you find the answers you want and feel better :)


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tarni Rookie

Hi Bigbread, yes Damn indeed! I

Monklady123 Collaborator

Yep, just go gluten-free and if you feel better then that's your "diagnosis". I've opted not to have the endoscopy because I don't want to go through several months of eating gluten every day. For me it's simple -- if I eat gluten I feel awful, if I don't then I feel good.

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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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