Gluten Challenge?

[melmak5]

I know asking the internet for advice is sometimes like using a magic 8 ball for life decisions, but I feel like I am in a pickle, so here goes...

5/02 - Woke up in the middle of the night coughing and in pain, above breastbone (difficult to eat for 2 days, regurgitating food)

I was put on acid blockers

5/11 - Clear endoscopy, no biopsy

5/18 - Abdominal Ultrasound, liver, pancreas, appendix, gall bladder, kidneys normal (small non-obtrusive stone in left kidney)

6/12 - Motility test, normal

6/28 - Diagnosed with Celiac via blood tests

At some point I also had a stool test, came back negative for parasites.

My symptoms: C&D, abdominal pain, distention, bloating, fatigue, burping, burping with regurgitation, bleed from the rectum, dizziness, weight loss.

I have been gluten-free since 6/05, but I have found a lot of little things I was doing wrong, so truly since 7/08 (and dairy free as well).

My problem is that things got better the first two weeks and have proceeded to get worse, a lot worse. I was up until 4 a.m. with the worst D of my life, nearly 100% liquid with painful abdominal cramps.

I am on an antispasmatic, but its not really doing much and it makes me so loopy I cannot function.

I am scheduled for a bacterial overgrowth test Monday and a colonoscopy Wednesday, but today, GI doctor #2 said she wants me to start eating gluten again so that she can do another endoscopy with biopsies.

I think for the first time in my life my desire to be healthy and not in pain is trumping my want for pizza. Eating gluten right now seems like a really bad idea, especially since I am so physically exhausted and already battling making it to and from the toilet.

I don't know if I am scared or being selfish or just being really smart about acknowledging doctors often don't know that is best.

Thoughts, suggestions?!

[Lisa]

Every new doctor that I have been to wanted to run their own tests. One ran the celiac panel on me after being two months gluten free. It was negative, so he determined I needed lexipro, regardless of the positive endoscopy and biopsy.

I don't think that you should compound your already unsettled health by going back to a gluten diet. You have already been diagnosed through you blood work. I see no other need for conformation for you new GI. (other, that perhaps a view of damage).

Are you certain that you have removed ALL forms of gluten, i.e. meds, shampoos, lip balms, pots and pans, wooded spoons....

You may, as I have, developed other food intolerances such as soy? When I get sick, I go back to the basics like meats, seafood, rice, veggies, fruits and eliminate all processed foods.

Totally gluten free from 7-08 is a relatively small amount of time to heal you gut. If you were not 100% gluten free from your diagnosis date, even the slightest of gluten would have continued to do damage - you were not gluten free.

Hope you fee better soon, in my humble 8-ball evaluation.

[Jestgar]

I am scheduled for a bacterial overgrowth test Monday and a colonoscopy Wednesday, but today, GI doctor #2 said she wants me to start eating gluten again so that she can do another endoscopy with biopsies.

I can't think of any reason why eating gluten for another endoscopy would be a good idea, or even informative.

You feel bad now, and you aren't eating gluten. Why does she care what happens when you do eat gluten? What would she change in her treatment of you if a new endoscopy was positive? or negative for that matter?

[melmak5]

Thank you MommaG

I bought new pots/pants/utensils 2 weeks ago, and I have a separate giant tupperware bin that I store everything in and my house mates are not allowed to touch.

My "real" gluten-free date is because I found wheat in my lip balm and multivitamin and oatmeal in my body wash. So I am as sure as I feel I can be.

I did cut out soy a few weeks ago. I ate some chocolate covered soy nuts and it was like a grenade went off in my guts.

It is going to be hard to pry the gluten free pancakes from my clutches, but unprocessed seems to make a lot of sense.

Thanks a bunch.

[melmak5]

Jestar - she is questioning whether Celiac is the right diagnosis or not. She wants to "rule it out."

But I really don't want any more pain or bleeding, so I think I am going to just ignore her for the time being and do the test, see what they say and go from there.

[Jestgar]

Well, you haven't been gluten-free very long. Get the endo done right away without returning to gluten. Or, if you do feel better gluten-free, tell her you aren't planning on changing that anyway, and if she thinks there may be other problems she should pursue them anyway.

[melmak5]

Jestar - Thank you, I think that is exactly what I am going to do.

[tom]

If I were in your position, there's no way I'd eat the gluten.

I was ready to *hit* the jackass Dr that didn't accept my refusal the 1st or 2nd time he asked me to eat *&^%$#$%^ bread for a month.

3x in 20 minutes this supposed expert told me to eat bread.

Throughout the entire hour w/ this jackass, who's quite well known to Bay Area celiacs, he demonstrated just how little he actually knows.

Makes my blood boil.

[melmak5]

Update - Bacteria Overgrowth Study came back positive today

I have never been so happy! This is most likely the reason why it hurts 5-30 minutes after I eat!

Antibiotics here I come!!

[kbtoyssni]

Yay! I'm glad you figured out what was wrong and that it's easily treatable. Make sure you take some probiotics after your antibiotics are gone.

[CarlaB]

Update - Bacteria Overgrowth Study came back positive today

I have never been so happy! This is most likely the reason why it hurts 5-30 minutes after I eat!

Antibiotics here I come!!

I have this, too. I have Klebsiella and Citrobacter overgrowth and none of some of the good stuff.

My doctor is holistic, but also has me on abx (for Lyme Disease). I found that 20 days on Cipro didn't touch the bacterial overgrowth! I felt better while on it, but the day I got off it, it all came back. I have exactly what you are describing.

My doctor wants me to try to take some herbs and probiotics for a while to see if we can get my intestines back in good shape. The herbs are -- plant tannins, Uva Ursi, Oregano oil, and Berberine. So far, I'm on Oregano oil and Uva Ursi ... I need to look online for the other two.

I also take massive probiotics -- Ultra Flora, Theralac, and VSL#3. VSL#3 is the most potent one I've ever seen at 450 billion live cultures! All are available online. You need to take probiotics either an hour before, or at least two hours after abx. I take them at bedtime and sometime in the middle of the day.

I would talk to your doctor about doing these things along with the abx. Your doctor may laugh at herbal protocols though ... some do. Anyway, even with the abx you will still need to build up your intestines to where they need to be.

My bacterial overgrowth results showed which abx and which herbs will help with the specific bacteria I have ... you might ask for a copy of that, or at least find out which bacteria you are dealing with so you can research it yourself.

[melmak5]

CarlaB - Thanks, I will definitely try to find out what bacteria are harboring in my guts. The technition would only say the test was positive, so I have to wrangle a doctor into calling me back to find out what's next.

I would have never thought to take the probiotics with the antibiotics (I have been taking probiotics for 2 months now and was going to stop, but I will ask about continuing.)

I am thrilled at the idea of wearing a pair of pants all day without having to unbutton them or slump/slouch in chairs to not be in pain!!