Gluten challenge I'm scared!

[Jherm21]

Hello all! Seeking some advice for my future follow up with my gastroenterologist. Here's the deal I've been gluten free for 9 months. I did an endoscopy and colonoscopy in December 2016. At that time I also did a celiac blood panel that included ttg igG and ttg igA and demiated IgG and IgA those came back negative but the biopsy of my small intestine showed mild villous blunting and increased intraepithelial cells. I originally went into the gastro for chronic morning diarrhea that had lasted atleast 5 months everyday like clockwork prior to that I was constipated for weeks on end. Ok so doc calls me 3 days after endoscopy and tells me "I have celiacs" I had no idea what gluten was not did I have any idea I had problems with food. After the first 3 weeks I dropped 10lbs mind you after going gluten free i had the diarrhea for atleast 4 months in to the diet then I noticed my stool finally started to form and by month 7 I gained all my weight back I went from 108 to 124 I'm 5'6 so this is healthy. Before finding out about the gluten mystery I originally called my primary because I was having extreme confusion, depression anxiety attacks insomnia the confusion is what brought me to go to docs very scary. That has since subsided and last a good 8 months before and after going gluten free. I didn't even recognize my mother at one point. I thought I had dementia. Anyway I had a hydrogen breath test back in september and was told my methane baseline was high and elevated to 59 it's suppose to be 10 or less to be negative.  Since my hydrogen levels weren't elevated my doctor said it's not SIBO but she didn't know the significance of the high methane and that I may benefit from xifaxinand neomycin together for 2 weeks well we've been appealing the xifaxin for the third time since September since the insurance has denied it. Ive been super strict with my gluten free diet and dairy free and have noticed some small improvements but am still having issues where I constantly feel like I'm coming down with something or that my body is inflamed. I do have seasonal and perennial allergies and was having issues with my thyroid and last time we checked my tsh was at 7 and t3 was wiped out pretty low and my endo has not out me on medicine since trying it in February because I was having heart Palps from it (strange I know) i have also been losing a lot of hair and just wonder I I even have celiacs disease or is it some type of bacteria. I need help doctors don't do much within their 10minute appointments. My gastro offered to do a gluten challenge but I don't know if I see the need since when I did the blood test I was eating gluten. Oh one more thing I saw 2 gastros for this the diagnosing doctors pathologist said there was villous blunting and the doctor I saw at the universitys pathologist looked at the same specimen and saw IEL's. I'm not 100 percent convinced. Should I do challenge. She said it would only be 2- 4 weeks on gluten this is a celiacs specialist but from what I read you should eat it alot longer. I'm someone that needs a definite diagnosis especially something that is chronic. Science is so not perfect! Ugh!

[Jmg]

Hi

To be honest with a positive endoscopy finding and response to the gluten free diet you've achieved the 'gold standard' for celiac and a level of certainty far in advance of many others here. Some celiacs test negative on blood, so endoscopy is more conclusive. 

That doesn't mean you can't have other things going on, maybe the hydrogen test is indicative of candida or something else? That wouldn't however preclude you having celiac or invalidate the initial diagnosis.

having said all that, you know yourself better than anyone so if you need more certainty you could do another challenge. 6 to 8 weeks for blood, 2 weeks for endoscopy is my understanding of how long the period is but others may have better info. I found it helpful to keep a food diary when I did mine, that would help you track any response to being back on gluten.

Be warned that the challenge can be difficult as yr response may have changed during your time off gluten. The first couple of weeks were worst for me. Oh and I tested negative after all that too!

best of luck whatever you decide

 

[Jherm21]

JPG, so even after your gluten challenge the blood test came up negative? Seems like there may be no easy way lol. I guess looking back I have improved just not 100 percent which is understandable especially if I have other issues. Thanks for your advice. It would be a good Time to do the challenge since Xmas is coming up???I could gorge on Xmas cookies but probably end up by the toilet. 

[Jherm21]

JMG # darn autocorrect. 

[Jmg]

29 minutes ago, Jherm21 said:

JPG, so even after your gluten challenge the blood test came up negative? Seems like there may be no easy way lol.

I had a negative blood test, but due to doctor not knowing about gluten it was probably invalid as I'd been gluten-free for some time and only went back on it for a week beforehand. My gastro then moved me straight to endoscopy on basis of symptoms and prior response to gluten-free diet. Endoscopy was negative after the challenge however, bar gastritis and hiatal hernia. I did a 2nd blood test, never given results but I believe they were negative.

It was a big shock as I was convinced it would be positive. There are no guarantees however and I'd had enough of being back on gluten. I've come to realise whether celiac or NCGS doesn't make much difference if you know gluten affects you. Either way you have to strictly avoid it, or at least I do. 

34 minutes ago, Jherm21 said:

I guess looking back I have improved just not 100 percent which is understandable especially if I have other issues.

Consider trying to address those other issues. Either by looking for additional intolerances, it's not uncommon for these to surface after gluten is removed, so look at fodmaps for instance? Or by looking at diet and supplements. I've found I function a hell of a lot better with a regular B complex supplement and Magnesium, calcium and zinc supplements.  

Don't do another challenge unless you absolutely have to. You may put your recovery back and at your current stage you may have more healing to take place which a challenge would delay. 

All the best

 

[Victoria1234]

I did a post earlier where I recommended to not do it- and I must not have posted it, lol.

as long as you've got the villous blunting, I would be pretty confident of your celiac dx. Unless you've been taking nsaids ever day? That can do it as well. But I'd stick with gluten-free living for now.

Were you on levo or armour for your hypo? Because once that's under control you're u should feel so much better. Levo gave me occasional heart palps but they went away after a week. Not that it's done much for my symptoms.... I've heard armour is superior for many folks.

hope you feel better very soon!

[Feeneyja]

I did a 4 week gluten challenge back in May and would not recommend it to anyone. It was hell. I was negative anyway. It took me months to feel better. 

My daughter also has gluten intolerance (also gluten challenge and negative afterwards).  It affects her GI and nervous system. Some scary symptoms. But she also tested positive for SIBO. You can either be methane or hydrogen positive for SIBO. Methane is often more difficult to treat. Her gluten and SIBO symptoms are different. And it took quite some time to get on top of the SIBO.  She is currently SIBO free, but joint pain and joint rashes have brought us to the point that I'm taking her to Mayo Clinic in December. 10 minutes with a doctor is not long enough to figure anything out. I hear your frustration. 

You might want to check out Open Original Shared Link .  It has everything you need to know about SIBO. I am pretty sure you can also have villious atrophy with SIBO. I don't know about an increase in IELs.  But also know that gluten intolerance is associated with SIBO.  Many folks with celiac that is not responding to the gluten free diet turn out to have SIBO. 

 

[Victoria1234]

12 hours ago, Feeneyja said:

I am pretty sure you can also have villious atrophy with SIBO. I

I think so too.

Open Original Shared Link

[Jherm21]

Wow they have neomycin the antibiotic listed as a result of villous atrophy which is a medication that helps with SIBO,  hmmm the body and the outside world sure is strange.