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Thanks for all the thoughtful responses on trying a gluten challenge after being mostly gluten-free for the past few years. I am leaning toward skipping the challenge, Enterolab stool antibody and genetic testing, and of course, continuing to find sources of hidden gluten, especially when eating out.
Here is the summary. It's quite long.
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I put my family on the gluten challenge, but after 4 weeks my husband was too sick to continue. It obviously wasn't long enough though b/c he tested negative, although we believe he has CD. My daughters were on the challenge for 7 weeks, yet they also tested negative. Both my husband and my daughters are now GF b/c I know that they have problems with gluten even if the blood test didn't show it.
I have heard 3-6 months for the gluten challenge. If you've been eating mostly gluten free (as my husband & daughters had been), then it may take even longer b/c your body is so free of damage from the gluten.
PS Knowing what I know now about all the damage that can occur to your body during the gluten challenge, I would not put my family through it again. It took several months for my 5 year old to adjust after we ended the gluten challenge.
Why does getting a blood test mean you will have to have a gluten
challenge diet? A gluten challenge is a disaster for many people and can do
serious damage.Please go to www.enterolab.com and read their Frequently Asked
Questions. It will be an eye opener for you. There is no way I would have a gluten
challenge. There are better ways to get a definite diagnosis besides a
biopsy. That is old fashioned and not always accurate. 30% of negative
biopsies are false negatives because the tissue samples were inadvertently
taken from an undamaged site. I have
I will attach my daughter, Linda's story. Also will send you a copy of
her 2 page lab report in a separate e-mail.
There was a posting on Friday, October 14,2005 by Charlotte Ward-Perkins entitled "New Study Suggests results of gluten challenges can be misleading". If it isn't in your files
(saved email,deleted, etc) let me know. I have it saved in my files and can
forward it to you.
If I can help you in any way let me know. My family thinks
Enterolab is the most definitive, non-invasive, inexpensive testing available
today!!!!!!!!!!!. Dr. Kenneth Fine, owner of Enterolab, is a
gastroenterologist and research scientist , also has celiac!
BTW UK advice is at least 10g (4 slices) for 6 weeks, not 2 weeks. It may or may not be long enough. No one really knows. A biopsy may tell you more than blood tests in this situation.
Gluten challenges
Posted 14 Oct 2005 celiac listerv and GFMB
This small study suggests that short-term gluten challenges are not good at identifying coeliacs already on a gluten-free diet. ie if after being on a gluten-free diet you eat gluten for 3 weeks you may get symptoms but not blood antibodies. Incidentally the tests mentioned that suggest they were having a reaction were stool tests.
This was only a tiny sample, no biopsies were done to see what was happening in the gut nor is it clear how long the patients had been on the diet: they were all diagnosed coeliacs so they may have been on it some time.
However it is another indication that people seeking a diagnosis of CD should NOT try the diet (for any length of time) before testing. Also that results from postponed gluten challenges may be misleading. This may be relevant for parents considering delaying for a few years a final diagnosis in a child.
Clin Gastroenterol Hepatol. 2005 Jul;3(7):679-86. Related Articles, Links
Low-dose gluten challenge in celiac sprue: malabsorptive and antibody responses.
Pyle GG, Paaso B, Anderson BE, Allen D, Marti T, Khosla C, Gray GM.
Celiac Sprue Research Foundation, Palo Alto, California 94304-1193, USA.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16206501&query_hl=1
BACKGROUND & AIMS: Undiagnosed patients with symptoms of celiac sprue often present to physicians after establishing dietary gluten exclusion. Although they must resume a gluten-containing diet for evaluation, there are no guidelines regarding duration of the gluten challenge, gluten dose, or monitoring parameters. We investigated the effects of a short-term gluten challenge in asymptomatic treated adult celiac patients on intestinal absorption and celiac antibody tests. METHODS: Eight adult asymptomatic celiac patients consumed either 5 or 10 g of partially hydrolyzed gluten per day in an orange juice mixture for 21 days while maintaining their usual gluten-free diet. A symptom questionnaire, serum antibodies (antigliadin immunoglobulin [Ig]A and antitransglutaminase IgA and IgG), D-xylose urine excretion test, and 72-hour quantitative fecal fat test were monitored. RESULTS: Two patients (25%) had at least 1 abnormal celiac antibody test at baseline. There was no increase in
antibodies during gluten exposure compared with baseline for any of the patients (P > .05). At baseline, 1 patient had abnormal urine xylose excretion, and 3 patients had abnormal fecal fat values. At day 15 of gluten challenge, all patients had reduced xylose absorption compared with baseline (P = .0019), and 5 of 8 participants (63%) reduced their xylose excretion to the abnormal range. Seven of 8 patients (88%) had increased fecal fat excretion at day 15 (P = .026), and 6 of these (75%) had steatorrhea by day 15. CONCLUSIONS: Short-term gluten challenge in asymptomatic adult celiac patients produces carbohydrate and fat malabsorption but does not increase transglutaminase and antigliadin antibody titers.
There is no set standard for a gluten challenge. There are case reports in
the literature that it can take up to 5 years for the intestinal damage to return.
Further, blood tests are reported to yield a 5-15% rate of false
negatives.If you insist upon pursuing a diagnosis, I urge you to arrange for a
seriesof endoscopic biopsies that will be read by a celiac-experienced
pathologist, and follow a regular diet for at least 3 months prior to the
endoscopy. Just how long the challenge should last is quite a
contentious issue so please do not take the above suggestion as anything more than
aguess..... you could still wind up with a false negative even after 3 months
on a regular diet followed by an endoscopy.
My doctor is Dr. Cynthia Rudert GI of Atlanta Ga. You can do a google
search to read some of her articles and I think some are on the Clan
Thompson celiac website.
As a self diagnosed celiac and a medically diagnosis "Gluten
intolerant," I asked her about doing a gluten challenge. She said the standard among
the celiac experts is to be on gluten for a minimum of 6 months to one
year. One needs to build up enough antibodies to have an accurate test
result.
Ask yourself why you want the official diagnosis. Having the label will not
change how you are treated by the medical or insurance world nor will
it change the prescription for health, a gluten free diet.
I tried the challenge to help my children's doctors take my children's
problems more seriously. If I have an official diagnosis then they
will look at my children as high risk rather than dismissing our symptoms as
notsevere enough. I lasted six weeks. My reations to gluten and lack of
symptoms of a strict gf diet are proof enough for me.
Good luck. Taking a challenge is a difficult decision to make.
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