Getting Down To The Source Of The Problem

[countrysnow]

I am looking for help. I am currently active duty military and have had chronic constipation with bloating and gas for years now. I was told I had IBS but the meds did nothing. After two pregnancies and the chronic constipation I now have rectal prolapse.

About 6 months ago I came across a diet program in one of my fitness magazines and decided to try it. After 1 week all my symptoms were gone. Including constipation, headaches, burping, gas, ankle knee and elbow pain, the feeling of hungover upon waking, and most of all my energy level was amazing.

I started researching and found out the diet was gluten free. It was recommended to only stay on this diet for 21 days since it was also calorie restriction. Within a few days all my symptoms were back. I decided to go gluten-free again and made an appointment with a GI doctor.

I am not sure the doctor believed me since I am not underweight and "sickly" looking.

He did blood work on me even though I was already gluten-free and told me it would be fine. The test came back negative. Then he told me to stay gluten-free and see how I felt for 6-8 weeks. I scheduled a followup and told him that I still felt amazing and he said he would do a two week gluten challenge and a biopsy.

During the two weeks all of my symptoms of gas, bloating, weight gain, constipation and mouth sores returned. I also was so fatigued I slept for an entire weekend. When I would start eating I would become very dizzy and nauseous, a few times throwing up my food.

The biopsy results were negative and now my doc has pretty much said he doesn't know and I feel as though he has dismissed me.

I guess my question is should I seek a second opinion? Shouldn't blood work have been repeated after the gluten challenge?

Could I still have celiac disease?

Please Please help if you can with a response. I am just trying to get better.

[ravenwoodglass]

Listen to your body, it has given you the answer. A two week challenge is often not long enough to redo enough damage for a doctor to deem you to have celiac if you have had some healing. The challenges are usualy 6 weeks to 3 months. Even then false negatives are not uncommon for a varitey of reasons. You body is much happier without gluten and has made that clear.

[The Fluffy Assassin]

I am looking for help. I am currently active duty military and have had chronic constipation with bloating and gas for years now. I was told I had IBS but the meds did nothing. After two pregnancies and the chronic constipation I now have rectal prolapse.

About 6 months ago I came across a diet program in one of my fitness magazines and decided to try it. After 1 week all my symptoms were gone. Including constipation, headaches, burping, gas, ankle knee and elbow pain, the feeling of hungover upon waking, and most of all my energy level was amazing.

I started researching and found out the diet was gluten free. It was recommended to only stay on this diet for 21 days since it was also calorie restriction. Within a few days all my symptoms were back. I decided to go gluten-free again and made an appointment with a GI doctor.

I am not sure the doctor believed me since I am not underweight and "sickly" looking.

He did blood work on me even though I was already gluten-free and told me it would be fine. The test came back negative. Then he told me to stay gluten-free and see how I felt for 6-8 weeks. I scheduled a followup and told him that I still felt amazing and he said he would do a two week gluten challenge and a biopsy.

During the two weeks all of my symptoms of gas, bloating, weight gain, constipation and mouth sores returned. I also was so fatigued I slept for an entire weekend. When I would start eating I would become very dizzy and nauseous, a few times throwing up my food.

The biopsy results were negative and now my doc has pretty much said he doesn't know and I feel as though he has dismissed me.

I guess my question is should I seek a second opinion? Shouldn't blood work have been repeated after the gluten challenge?

Could I still have celiac disease?

Please Please help if you can with a response. I am just trying to get better.

Ravenwoodglass is exactly right; I just wanted to add that there are some doctors who will diagnose you based on dietary response alone. The Doctors forum on this board might be a good place to find one, or you could join a local celiac support group and ask members for recommendations. IF you can find such a doctor, then sure, get a second opinion and a diagnosis. Otherwise, please just consider yourself diagnosed. You could see another, more competent doctor who would insist on a six-week gluten challenge for your blood draw, and that you continue eating gluten until your endoscopy. But your body clearly couldn't stand it. Don't do it.

Good luck to you, don't let the bad doctors get you down, and best wishes on a happy gluten-free life. We're pretty good on tips for dealing with that around here, too.

[momxyz]

there are lots of people here on this board that will hear you loud and clear! In my case I am trying to help my daughter, who is currently dealing with depression, insomnia, and constipation.

Yes it may have been appropriate to have bloodwork done at the time of your biopsy, although since you had been gluten free for a while, even with a gluten challenge, they still could have been negative. Tests for antibodies related to celiac disease are fraught with a lot of if, ands, and buts. Here's a good article, very detailed, about the interpretation of this bloodwork.

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

And, it is very possible for you to have a positive antibody test in the presence of a negative biopsy. In my daughter's case, she had a very slightly elevated anti gliadin IgG (this was six years ago). the endomysial ab was neg, but they proceeded with endo and bx - her bx was negative. So, they ruled out Celiac's disease and never talked about avoiding gluten. Yet she continued to have some bowel symptoms and was treated by another modality - but that's another long story.

What it bowls down to is that current medical practice pins the diagnosis of Celiac disease on a positive biopsy. If you have postive ab (or like in your case, a positive response to the diet) and a negative biopsy, there are several possibilities:

1. Biopsy can be a hit or miss process - if you don't have a frank case where lots of the intestine is inflamed and infected, they simply may not detected affected areas.

2. You have Celiac disease, but it has not progressed to the point where it has damaged your intestines. Everyone's "timeline" seems to be different.

3. You don't have Celiac, but you do have Non Celiac Gluten Intolerance, which can produce some of the same symptomology to varying degrees in different people, in the absence of atrophy of the villi, but its not something to be tossed off as a minor ailment.

I understand about the feeling of being dismissed. When I proposed to my daughter's therapist my idea that gluten intolerance might be a contributing factor to her feelings.... well I didn't get looked at like I had three heads, but I did get the feeling of a nonverbal "that's nice dear" response. Most medical practioners are still going on the standard criteria of a positive biopsy, and the idea of "latent" Celiac disease or Non Celiac Gluten Intolerance is only beginning to dent the conscience of some practicioners.

Here is some reading for you. One is a power point, addressing the differential diagnosis between Celiac and Non Celiac Gluten Intolerance. The other is a you tube of a medical conference on Celiac Disease, which is exellent because these are "mainstream" physicians who "get it". Its long but even if you watch the first presentation you'll get a lot out of it.

Open Original Shared Link

Where to go from here?

Well, in our case, I don't give a damn about an "official" diagnosis. My daughter has been trying to gluten free for 3 weeks and we are seeing some slow improvement. (In contrast to your rapid improvement, which points to a stronger liklihood of celiac in my mind) She has had a few times where she has "fallen off the wagon" and noticed a reaction of varying degrees. Enough so that even as a stubborn teenager she is now working to stay gluten free in social situations.

So we are going day by day. I have seen changes in her mood that give me hope, and she slept really well this weekend. fingers crossed, hoping this continues..

One avenue we are considering is genetic testing. HLA types DQ2 and DQ8 have a strong association with Celiac Disease. there are other types that have association with other forms of gluten intolerance, I am just beginning to learn about this and started a topic on it:

https://www.celiac.com/gluten-free/index.php?showtopic=60850

There are several labs that can do this typing, but from what I've read, Enterolabs is the only one that goes beyond just DQ2 and DQ8. I am not planning on submitting this to insurance so it won't be done right away... it's not going to change our course of action at this point anyways.

At any rate, I think you should just eat gluten free, since you know you feel healthy on that diet!

Does a diagnosis matter that much?

Unless of course you were deployed....would that make eating gluten free hard?

[Foxfire62]

I am looking for help. I am currently active duty military and have had chronic constipation with bloating and gas for years now. I was told I had IBS but the meds did nothing. After two pregnancies and the chronic constipation I now have rectal prolapse.

About 6 months ago I came across a diet program in one of my fitness magazines and decided to try it. After 1 week all my symptoms were gone. Including constipation, headaches, burping, gas, ankle knee and elbow pain, the feeling of hungover upon waking, and most of all my energy level was amazing.

I started researching and found out the diet was gluten free. It was recommended to only stay on this diet for 21 days since it was also calorie restriction. Within a few days all my symptoms were back. I decided to go gluten-free again and made an appointment with a GI doctor.

I am not sure the doctor believed me since I am not underweight and "sickly" looking.

He did blood work on me even though I was already gluten-free and told me it would be fine. The test came back negative. Then he told me to stay gluten-free and see how I felt for 6-8 weeks. I scheduled a followup and told him that I still felt amazing and he said he would do a two week gluten challenge and a biopsy.

During the two weeks all of my symptoms of gas, bloating, weight gain, constipation and mouth sores returned. I also was so fatigued I slept for an entire weekend. When I would start eating I would become very dizzy and nauseous, a few times throwing up my food.

The biopsy results were negative and now my doc has pretty much said he doesn't know and I feel as though he has dismissed me.

I guess my question is should I seek a second opinion? Shouldn't blood work have been repeated after the gluten challenge?

Could I still have celiac disease?

Please Please help if you can with a response. I am just trying to get better.

The only way to know for sure if you have celiac disease is to stay on a gluten diet for awhile and get biopsied. If you felt amazing on a gluten-free diet, why not just stay on it and assume you have it? Or at least assume you are "gluten intolerant."