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Getting tested

Maria33255
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Maria33255 Newbie
Maria33255
Posted

Hi everyone, I would like to know how can I get tested without having to gluten because I already can't eat it. Is there a way for me to get tested without having to eat gluten? Suggestions are welcome. Thanks.

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trents Grand Master
trents
Posted

Sorry, but there is not. If you are already eating gluten-free let's ask the most important question. Did your symptoms improve significantly with eliminating gluten?

Scott Adams Grand Master
Scott Adams
Posted

If your answer is this clear, and you already know that you cannot tolerate gluten, there is probably a little reason for you to go through a gluten challenge to get tested. Most people want a diagnosis because the diet is very tough to stay on for life, but to me it sounds like you already have your answer.

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @Maria33255!

For peace of mind, you might try a DNA test to see if you have any of the most common genes for Celiac Disease.  Not all Celiac genes are known.  Just having the genes doesn't necessarily mean the genes are activated and causing Celiac.  But, since you have improvement on the gluten free diet, it might be a safe assumption to make. 

I couldn't stay on a gluten challenge long enough for blood tests to be accurate, but I do have two Celiac Disease genes.  Having genes and improvement on gluten free diet is enough for me. 

Hope this helps!  Keep us posted on your progress!  

 

  • 3 weeks later...
Maria33255 Newbie
Maria33255
Posted
  • Author
On 2/20/2022 at 10:34 AM, trents said:

Sorry, but there is not. If you are already eating gluten-free let's ask the most important question. Did your symptoms improve significantly with eliminating gluten?

 

On 2/20/2022 at 10:01 AM, Maria33255 said:

Hi everyone, I would like to know how can I get tested without having to gluten because I already can't eat it. Is there a way for me to get tested without having to eat gluten? Suggestions are welcome. Thanks.

Thanks for your comments everyone. To give you a background on my condition, I have leaky gut syndrome. My symptoms improved when my naturopath introduced a gluten and lactose free diet which worked together with their prescription. However, when I am under stress, I get a severe case of dermatitis herpetiformis that spreads on parts of my body followed by other symptoms that are worrying me. That is why, I wish to get tested to perhaps rule it out. I just don't want to consume gluten to do the test because I already have rashes all over my body and I don't want it to get worse than it already is. Perhaps the DNA test may be safer for me to take.

trents Grand Master
trents
Posted

As you may know, the DNA test can only establish the potential for developing celiac disease. It cannot establish whether or not you do have celiac disease. It takes both the potential and some kind of triggering stress event (such as a viral infection) to turn potential into active.

But you say when you get stressed you get DH. How do you know it's DH? Have you had a skin biopsy done to confirm that? If in fact you do have DH then that confirms you do have celiac disease since there is no other cause for DH.

knitty kitty Grand Master
knitty kitty
Posted
15 hours ago, Maria33255 said:

 

Thanks for your comments everyone. To give you a background on my condition, I have leaky gut syndrome. My symptoms improved when my naturopath introduced a gluten and lactose free diet which worked together with their prescription. However, when I am under stress, I get a severe case of dermatitis herpetiformis that spreads on parts of my body followed by other symptoms that are worrying me. That is why, I wish to get tested to perhaps rule it out. I just don't want to consume gluten to do the test because I already have rashes all over my body and I don't want it to get worse than it already is. Perhaps the DNA test may be safer for me to take.

Hi, Maria!  

Are you having Dermatitis Herpetiformis outbreaks or could you be having Hives?

Dermatitis Herpetiformis outbreaks usually occur after exposure to gluten.  Iodine (as in iodized salt, eggs, dairy, and seafood) can make DH flare.  Have you kept a food journal to see if there's an association with something in your diet?  Do you eat processed gluten free facsimile foods?  Some food preservatives and food coloring can trigger DH flares.  

Hives can flare up when under stress, after exercise, and when experiencing temperature changes (going from warm inside to cold outside for example). 

Do these rashes get worse when you have been out in the sun? 

What prescription did your naturopath give you?

What are the "other symptoms" that are worrying you?   We could be more helpful if we knew a little bit more.  

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      Help I’m cross contaminating myself,

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      Help I’m cross contaminating myself,

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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