What is a Gluten Challenge and How Long Must it Last?

Accurate but confusing information. My "executive" summary:

Eating 1 to maximum 2 slices of bread per day, minimum 2 weeks can give enough gluten to render a proper serologic (blood) test. Other factors apply, therefore read full article for important considerations.

This was helpful but if I'm having an upper GI and a biopsy, can I eat less gluten to show positive (over the blood test)? I've been off of gluten for a year and not sure it's helping anything but I'm so afraid to go back, however, I don't want to undergo the biopsy and upper GI if it's pointless.

My 5 year old daughter's symptoms point to celiac. After 6 months of symptoms the doctors are finally willing to entertain that there is a problem, blood work came back positive. The G.I. specialist isn't available for 2 months to meet and schedule a test, another (2 months??). We can't feasibly continue to poison this poor girl waiting for the test as symptoms of distended stomach and malnutrition are apparent already. Knowing that the diet must have gluten to present proper results, we don't feel comfortable continuing behaviour that is damaging.

Question is; does it make sense to stop the gluten diet now, wait for improvement and not preform the test?

Should we resume eating gluten just prior to the testing? Will this still give correct and accurate results?

Continue feeding her gluten and wait for the doctors to become available?

Bear in mind that we have been on a Miralax dose twice the recommended for an adult and still suffer constipation and distended stomach.

Is there any other disease or illness for which the "confirmed" diagnosis requires that the patient subject themselves to bodily harm, possibly irreversible?  Is there any other disease or illness that requires the patient to submit themselves to conditions that could be called torture in order to arrive at a "confirmed" diagnosis?  If you have positive blood tests, and have been helped by eliminating gluten, why should you have to endure this extra challenge to your entire body (not just your digestive system)?  I didn't and won't submit myself to these extraordinary requirements, just so my doctor can be satisfied with a "gold standard" diagnosis.  If you, yourself want that gold standard diagnosis, and don't mind the extra harm that will be inflicted on your body, then you should have the test.  In the meantime, I'm going to wait until a test is developed that doesn't require that I torture and damage my body by ingesting gluten.

Yes, and many people can't go this route after going gluten-free and seeing relief. On the downside you may not get all the follow up care you should have that comes with a diagnosis, but on the upside you also won't have to pay higher private health or life insurance rates, which I've been dealing with.

22 hours ago, Scott Adams said:

Yes, and many people can't go this route after going gluten-free and seeing relief. On the downside you may not get all the follow up care you should have that comes with a diagnosis, but on the upside you also won't have to pay higher private health or life insurance rates, which I've been dealing with.

"...you may not get all the follow up care you should have that comes with a diagnosis..."   Follow-up care?  Most patients are given a sheet of information about celiac disease, and shown the door.  How many studies and surveys have we seen documenting the poor after-care for newly diagnosed celiac disease patients?

True, and I can attest to the fact that  my insurer, Kaiser, has done little to nothing to follow up my CD diagnosis, unless I ask them to do something like a follow up test. In general their doctors agree and run those, but if I didn’t have a diagnosis they’d likely deny those tests.

On 12/24/2015 at 6:58 AM, Guest james said:

My 5 year old daughter's symptoms point to celiac. After 6 months of symptoms the doctors are finally willing to entertain that there is a problem, blood work came back positive. The G.I. specialist isn't available for 2 months to meet and schedule a test, another (2 months??). We can't feasibly continue to poison this poor girl waiting for the test as symptoms of distended stomach and malnutrition are apparent already. Knowing that the diet must have gluten to present proper results, we don't feel comfortable continuing behaviour that is damaging.

 

Question is; does it make sense to stop the gluten diet now, wait for improvement and not preform the test?

Should we resume eating gluten just prior to the testing? Will this still give correct and accurate results?

Continue feeding her gluten and wait for the doctors to become available?

 

Bear in mind that we have been on a Miralax dose twice the recommended for an adult and still suffer constipation and distended stomach.

 

I can only give you a non medical answer based on experience. I am sorry you see your child struggling. It must be hard. It is not unusual to have a 2 month space between appointment, testing, and endo scopy.

My timeline was in 2016. My first Dr allergist/immunologist in March 2016 had to rule out allergies environmental/food IgE allergies, she then sent me to a another immunologist/specialist with a team including gi. I didn't get in until May for my initial appt. In June I went to rheumatologist to check for AI's. My scopes were scheduled in October. I had to eat gluten two weeks prior. 

I had been gluten-free for a few years before as I suspected I had gluten intolerance , but was diagnosed IBS (symptoms only) since my early 20s. I know your daughter is a child, and she may have a different timeline, but I wanted to let you know many of us have 2 months plus before scopes. 

I do know having been off gluten it was really difficult to go back on gluten. My husband and children said later they knew from watching me that a gluten-free household was coming before the results were in.

It is hard to see your child in pain and struggling. I am glad to hear that they are moving forward to determine if your child is celiac. I wish you all luck.

I ended up mostly removing gluten from my diet before I even heard of Celiac.  If it made me feel bad and gave me nightmares I quit eating it.  When I felt like there was nothing left I could eat safely I started researching what the commonalities in the worst foods were...found my answer and the Celiac symptoms explained my whole life.  Now, if I accidentally get glutened...it takes a serious toll on me - physically, emotionally, mentally and I just want to make it end before I have even figured out it is unexpected gluten.

Get "diagnosed"???  Haven't.  Reason: "cure" is "don't eat gluten".  Already doing that in a serious way (5ppm max).  Medical professionals (nurses & doctor) in my circle know less about Celiac than I do...and they readily admit it.

Learning how to avoid the gluten minefields of our foods, hygiene, cleaning and airborne products (about 20 years now) I do feel sooo much better, my physical issues have disappeared and I can finally function well in life.  It does take research on a company's manufacturing processes/ingredients in line with levels the body in question can handle.  Maybe some e-mails to them on their testing levels, too.  While not fun, I do prefer feeling good so it is worth it to me.

Alcohol based sanitizers everywhere with COVID is a challenge for me....  =\

Hm! Never thought of alcohol based sanitizers as being a potential source of gluten. But it is something to be aware of for sensitive celiacs who feel they get glutened transdermally. Would depend on what grain it is made from. A lot of it is made from corn or wood.

I unknowlingly experienced almost every symptom of celiac disease since I was a child--alternating loose stools/diarrhea and constipation (as a 12 year old, I underwent an embarrassing tactile colon examination that I'll never forget due to my digestive issues), underweight for many many years (not anymore, but as a child, couldn't gain weight--everyone thought I was anorexic and I was eating like a hog). About age 55, I developed new celiac related symptoms: constant cold sores that never went away, neurological symptoms including ataxia, focal myoclonic jerks in my hands and feet, cerebellar dysarthria, including scanning speech, muscular weakness. I spent a year being tested for other neurological conditions like MS and such with no diagnosis being made. However, during that time I also was diagnosed with fatty liver of unknown origin (I am a teetotaler), acid reflux and psoriasis. All these things point directly to celiac disease. So about two months ago, I went gluten free as an experiment. And miracle of miracles, after about a month, EVERYTHING started to go away--no more canker sores, no ataxia, reduced acid reflux, very few myoclonic jerks (from 4 or 5 a day to 1 every few days), no more bloating and loose stools/constipation--I finally found out what a normal stool is really like! Then, a couple weeks ago, while getting rid of all the gluten containing products in my house, I accidentally inhaled a bunch of wheat flour while transferring it to a plastic bag to give it to a relative. Withing two days: horrible canker sores up and down my throat and soft palate; ataxia making me look drunk when I walked; numerou; myoclonic jerks. After about a week, the gluten symptoms receded again, and I am now back to normal. But there is NO WAY I am going to poison my body for weeks and weeks, and even more importantly in my case, my brain (as it's clear I have gluten ataxia) in order for a doctor to give me the gold standard label and then tell me "don't eat gluten--that's all." Like a couple other people above, I'll happily wait for better diagnostic testing--which I've already read about and is being developed--to achieve a diagnosis, if indeed I ever feel in need of an official one. As long as going gluten free works for me, and it currently is, I am happy to continue to do so (BTW, I am also going anti-inflammatory low sugar, to help my body and brain heal even more). 

35 minutes ago, Guest LisaG said:

. . . I'll happily wait for better diagnostic testing--which I've already read about and is being developed--to achieve a diagnosis . . .

Lisa, what better diagnostic testing being developed do you refer to? Can you give a link?