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Does anyone know the correct way to prepare for Celiac blood test?


rmcozart22
Go to solution Solved by trents,

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rmcozart22 Newbie

So I’ve been back on gluten foods for about a week. Currently, feeling sharp pains on my left back area that start from the front of my stomach, nauseated and super tired but no throwing up, or diarrhea. I was doing so good not eating gluten for about 3 months. I’m so scared I literally pass out everytime I get sick 🤢. I’ve been eating gluten free minus cross contamination here and there.. Does anyone have any tips or know how long you should eat gluten and how much to eat daily my doctor told me a week but I’ve read to eat gluten daily for at least 3 months before testing for celiac disease. I've had an endo(which I naturally before the endo test stopped eating gluten by accident doctors said it was okay to eat how I was eating ironically only rice and eggs) and colonoscopy had test done to check my gallbladder and everything was good. Pretty much all of my symptoms matched and at the time I had developed a rash on my elbow as well from I’m assuming getting gluten. However told me in so many words that people of color usually don't have Celiac. Sadly I feel like he's kind of gave up helping, reluctant to test me and told me he'd see me in a year. Really new to this but maybe someone could suggest how to prepare for a celiac blood test as he told me to just look on Google but some say eat two slices a bread and go till you get sick, wait 2 weeks eat all the gluten or 3 months to be on the safe side. Sorry for the essay and thanks in advance ❤️.


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  • Solution
trents Grand Master
(edited)

Welcome to the forum, rmcozart22!

The Mayo Clinic guidelines are the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the day of the blood draw for celiac antibody testing. Different medical entities have different guidelines so if you research this you will find different recommendations and some of them will be less protracted than those of the Mayo. But, I think the Mayo can be trusted. You don't want to short change the gluten challenge and waste the effort for nothing because you didn't stay on gluten long enough for the build up of enough antibodies to make for valid testing.

Edited by trents
rmcozart22 Newbie

Thank you, very helpful! 

knitty kitty Grand Master

Welcome to the forum!

You could ask your doctor for a genetic test to see if you have any of the common genes for Celiac Disease.  Having the genes simply means you have the potential to develop Celiac Disease.  Not all Celiac genes have been identified though.  Yes, Celiac does happen in people of color.  

Also get your rash biopsied by a dermatologist who understands how to biopsy for Dermatitis Herpetiformis, the rash of Celiac Disease.  The rash appears after ingesting gluten.

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

Hope this helps!  Keep us posted on your results! 

rmcozart22 Newbie

Woah so helpful thank you! 

trents Grand Master

If you want to ensure that you are getting 10 gm. of gluten daily, you can buy pure powdered gluten at natural food stores and then you can weigh it on a scale. Before I was diagnosed with celiac disease my wife used to buy gluten and add it to the homemade bread she made in order to make it stick together better. We now joke how she was poisoning me.

Scott Adams Grand Master
Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 


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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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