Thoughts On Gluten Challenge?

[jennynic]

Hi everyone,

I'm new to this forum. I started my gluten-free adventure almost 5 months ago as a trial. Unfortunately my doctor refused to do testing before I went gluten free, and I didn't know enough at the time to insist or find a different doctor. I discovered that going gluten free made a huge difference in my overall health and cleared up multiple unexplained symptoms (some of which I've had since childhood). I'm suspicious that I have undiagnosed dermatitis herpetiformis (again, my dermatologist refused to do a biopsy), and recent tests indicate low Vitamin D levels and a severe B12 deficiency.

It took 4 months to get in with a GI specialist, who now wants me to do a 4 week gluten challenge. My endoscopy is scheduled for March 16. I want to wait until I get the results back from the gene test (should be early next week) and then I'm leaning strongly towards going ahead with the gluten challenge, even though I know I'll be miserable, mainly to help my family in their diagnosis process. I believe there are several undiagnosed Celiacs in my family (mom & her brothers). I also want to know for sure how strict I'll have to be the rest of my life.

I was wondering if there are others who have been in my situation who could offer any advice? Since I am just starting to feel good after 5 months of gluten free, I'm wondering if I reintroduce gluten if it will take 5 more months to get back to "normal" again after the endoscopy. I work full time, so I'm also worried how I'll be able to function during the gluten challenge.

Thanks,

Jenny

[Skylark]

For starters, four weeks is not necessarily long enough for you to test positive. I went and looked up some gluten challenge papers and it takes more like 2-3 months. Here's the post where I was talking about it.

I did not gluten challenge. I was in graduate school and I could not afford to make myself sick again. I'm curious whether or not I'm celiac but I know gluten makes me ill and I had mental health issues as well as GI trouble while I was eating it. I'm not willing to sacrifice 2-3 months plus recovery time and risk my sanity to satisfy my curiosity. I've had two different doctors tell me to not worry about gluten challenging - they say it's too hard to get a positive test.

[kareng]

Every October, the Univ of Chicago Celiac Ct has free Celiac blood tests. The post card they sent me said that you needed to be on a full gluten diet for 3 months.

[IrishHeart]

If I were to reintroduce gluten for 3 days, let alone 3 months to do a gluten challenge, I'd rather just shoot myself in the head right now. It would be easier.

I can understand you want a "firm diagnosis", but in truth, the treatment is still going to be the same: no gluten.

You feel better off gluten. Why undo all that?

Can you really afford to become that ill again?

It may even be worse because you have been off gluten for 5 months.

Biopsies have their flaws, too. Taking samples from the wrong places, not enough samples, patchy erosion, etc.

Blood work can be negative. Some people (like me) test Neg and are still celiacs.

And even the genetic testing is questionable. They recognize now that some celiacs (1-2%) do not have the DQ2 or DQ8 genes most commonly associated with celiac disease.

Symptom resolution is sometimes the only "diagnosis" some people ever have. But they do not care--they feel well for the first time in their lives.

Best wishes.

[AHopewell]

I decided just this week to forego "official" diagnosis. I can't imagine going back to feeling how I used to. Same as you, many symptoms that had plagued me my entire life were cleared. I also fear being labled with a diagnosis that could plague me if I ever have to change insurance. I feel I know what the situation is and will just have to live the best life I can gluten-free!

[emaegf]

Well the diagnosis for Celiac is supposed to be a 3 fold process not just one or two.

1 - Blood tests

2 - Biopsy

3 - Gluten Free diet trial

Even if blood work comes back negative you can still have damage that can be found only by biopsy if both those are negative but the patient is till experiencing symptoms then a trial of a gluten free diet should be made and if the patient respondes positivily to the diet they can be gluten sensitive which there is no test for and will not show up on biopsy.

I did a 14 week gluten challenge with tests before and after and both times they came back negative even though I was so sick and my body was covered in blisters (head to toe, in my nose and private areas). My dermatologist had the oldest doctor in the clininc come look at the blisterng, he took one look, declaried it DH from his experience and told me to go back to gluten free and told my dermatologist to get me on Dapson that day.

So yes you can still come out with negative tests and have the disease. I'd just stay on the diet unless you need medical documentaion (that's why I had to do the challenge) for some reason then try to find a doctor who will work with you. If you do go to the Gastro and you have the genetic test results back make sure to take a copy but keep the original for your own records. It should eb put in your file so if you have problems leter on they won't be repeating tests.

This will be a for life change as well.

[IrishHeart]

I did a 14 week gluten challenge with tests before and after and both times they came back negative even though I was so sick and my body was covered in blisters (head to toe, in my nose and private areas). My dermatologist had the oldest doctor in the clininc come look at the blisterng, he took one look, declaried it DH from his experience and told me to go back to gluten free and told my dermatologist to get me on Dapson that day.

So yes you can still come out with negative tests and have the disease.

You got incredibly lucky with a knowledgeable doctor.

DXing you on the spot like that--because he recognized DH--is amazing.

I know many members on here who had DH and NO doctor knew what the heck it was, some even refusing to biopsy as they requested, just to rule it out.

I was emaciated, nearly bald, weak from massive muscle mass loss, in crippling pain, burning nerve pain, dizzy and out of it, my scalp covered with small blisters, face swollen, etc, etc. and NOT ONE doctor found that clinically significant!!!

My new GI doctor, after taking a look at my photos from that horrible time in my life gasped when he saw them and said with a quiet voice.. "Oh no, no, no"

If I hadn't figured it out myself, I'd be dead.

I said to him, "Doc, the only thing missing was a giant red arrow pointing down, blinking CELIAC! CELIAC! CELIAC!"

[beebs]

Isn't there some study that seems to point to the more damage your villi has, the more likely you will come back negative on bloods?

I came back negative on bloods, and towards the end of my gluten eating days I was getting intussusception, its where the bowel kind of eats itself, and its a life threatening medical emergency. I have no official diagnosis as I haven't had biopsy but my Drs all agree that I could potentially die from eating gluten. At the end of the day I really wish I had a diag, but I think that is just my personality - I like to have things written out because at the back of my mind I always have the niggling feeling that possibly I am wrong about it.

There is a recent new study, where they have found a way to test biopsies for celiac without the patient having to eat gluten (putting the protein directly on the biopsies), I figure - that is what I'll hold out for - it'll probably take a decade to get going, but I can wait!

[emaegf]

You got incredibly lucky with a knowledgeable doctor.

DXing you on the spot like that--because he recognized DH--is amazing.

I know many members on here who had DH and NO doctor knew what the heck it was, some even refusing to biopsy as they requested, just to rule it out.

Oh I had 2 skin biopsies both done wrong, the first dermatologist was taking part of the blister which just ruins the sample and the sample she was taking as "normal" skin was actually the one that should have been used for the diagnosis. The second time the lab saw something abnormal in the "normal" biopsy so I had more tests including a second set of Celiac panel, that's when she decided to bring in the older dermatologist who took one look declaring it DH, adding "tests aren't always accurate". The only reason I had to go through the gluten challenge last year is because in 1994 when a dietician I was working with caught my Celiac she told my GP to follow up, he refused so she told me to just go gluten free. My GP was one of those doctors who went to the University of Minnesota Medical School in the 60s and was given a whole 30 minutes on Celiac and told "you'll never see a case of it it's so rare" Wrong! So my current doctor insisted on the challenge but I have more medical people I'm working with who knew me before, during, and now after who all stood up to her telling her I can't eat gluten, it just tore my body apart in so short of a time. One was even worried I would die before it was all over.

It helps to be informed and not be broken down by all the Nos of ignorant people. Doctors aren't Gods and they don't know everything but those who are willing to learn even from their patients are going to be more successful in all ways.

[IrishHeart]

It helps to be informed and not be broken down by all the Nos of ignorant people. Doctors aren't Gods and they don't know everything but those who are willing to learn even from their patients are going to be more successful in all ways.

Yes. This is my new GI doctor. He told me during my last visit that he learns more about Celiac from me than anything he could have learned in medical school or in his practice. He called me "a textbook". He likes when I bring him articles. We have the best talks.

Yet, dozens of doctors over the course of 30 years never saw it.

Arrogant, condescending and ill-informed.

[cahill]

Unfortunately my doctor refused to do testing before I went gluten free,

I (kinda) understand insurance companys refusing to pay for testing,, then we just pay for them our selves.

BUT a doctor refusing to do testing that I ask for is the FIRST indication I need to look for a new doctor.

My thoughts on a gluten challenge;;; NO WAY would I do one, not even for an "official " diagnoses.

I have spend so much time trying to get well , why would I intentionally poison my self

[cahill]

Yet, dozens of doctors over the course of 30 years never saw it.

Arrogant, condescending and ill-informed.

You must have see the same doctor I did because surly there are not more than a couple of them out there :P :lol:

** on the serous side I will add **some of them (doctors) are just down right dangerous for those that are gluten intolerant and celiac

[Metoo]

Its entirely up to you.

I was gluten free for 4 weeks, then ate gluten. It took me over 5 weeks to get my hand to heal again. I have diagnosed as 'stress enduced excema' but I suspect its DH. Its entirely gone when I am gluten free, and within 12 hours of eating gluten it had spread and gotten much larger and worse then when I was eating gluten. I am still struggling with broken skin on that finger 2 months later. =(

I sometimes 'think' about eating gluten, doing a gluten challenge. Usually though my skin breaks back open in the spot it was the worse, and I quickly forgo that thought!

I am trying instead to get my sister to get tested. It would be much easier for me, if my gluten eating sister was convinced to finally go in and get tested!

[IrishHeart]

Isn't there some study that seems to point to the more damage your villi has, the more likely you will come back negative on bloods?

Hi beebs!

I have seen this mentioned a few times lately--do you have any idea where this study can be found? My doc would love to see that one!

thanks, IH

[IrishHeart]

You must have see the same doctor I did because surly there are not more than a couple of them out there :P :lol:

:lol:

yeah right (snort) good one, Chill!