Results Are In!

[Mnicole1981]

And they were negative.

Now the GI wants a stool sample to rule out any bacteria.

This is disappointing.

[Bubba's Mom]

And they were negative.

Now the GI wants a stool sample to rule out any bacteria.

This is disappointing.

Some of us test negative. It can't hurt to go gluten-free anyway to see if you feel better?

The stool sample confuses me. There should be bacteria in the colon, so in the stool too. A hydrogen breath test checks for bacteria in the small intestine, where it should not be. Maybe they're checking for parasites, like amoeba in the stool?

I hope you get answers. The tests are frustrating!

[Mnicole1981]

They really are! I went gluten free right after my scopes and I have had some good and bad days. I had a bad DH breakout last year, and I have not had one since. I just have these inner elbow and back of knee rashes that itch like heck when I eat something that disagrees with me. Atopic dermatitis, which I understand is a symptom as well. That is enough diagnosis for me.

[ravenwoodglass]

They really are! I went gluten free right after my scopes and I have had some good and bad days. I had a bad DH breakout last year, and I have not had one since. I just have these inner elbow and back of knee rashes that itch like heck when I eat something that disagrees with me. Atopic dermatitis, which I understand is a symptom as well. That is enough diagnosis for me.

Inner elbows and knees are typical places for a DH rash. We do have good days and bad days in the beginning so you may want to continue on the diet and see if eventually your good days are much more frequent. I hope you are feeling better soon.

[Mnicole1981]

Some of us test negative. It can't hurt to go gluten-free anyway to see if you feel better?

The stool sample confuses me. There should be bacteria in the colon, so in the stool too. A hydrogen breath test checks for bacteria in the small intestine, where it should not be. Maybe they're checking for parasites, like amoeba in the stool?

I hope you get answers. The tests are frustrating!

At least he is trying, so that I appreciate. I talked with a lady at work who noticed my weight loss and complimented me about it and I told her how I had got sick. She said she had a parasite eating at her colon and got so sick, she lost 98 lbs. Nearly killed her. I haven't lost anymore weight, thank God.

[Mnicole1981]

I got the actual report. It says:

Duodenal biopsy: Duodenal mucosa, no significant histologic abormality

Random colon biopsy: colonic mucosa with focal crypt distortion. No colitis is seen.

[pricklypear1971]

I got the actual report. It says:

Duodenal biopsy: Duodenal mucosa, no significant histologic abormality

Random colon biopsy: colonic mucosa with focal crypt distortion. No colitis is seen.

How many samples did they take?

[cavernio]

You could still be gluten sensitive, however, I would expect in that case you'd have a fairly noticeable difference when stopping gluten. Maybe I'm wrong about that though.

Rashes can be due to many, many things, and even if it's the gluten dermatitis thing, I think it's still a histamine reaction, which doesn't involve the same category of antibodies as intestinal issues.

When was the last time you had an allergy test? Have you ever gone on an elimination diet?

If I were you I'd get an allergy test done for a multitude of foods and environmental factors. It might be weird things like certain food dies or preservatives that you wouldn't think to categorize as a 'food' even if you did do an elimination diet. And yes, there's a lot of guff about allergy tests, but again, like celiac disease, there aren't a lot of false positives.

[Mnicole1981]

How many samples did they take?

They took four from the lower end of the duodenum.

[GFinDC]

You can get the skin next to a DH blister biopsied also. If they find antibodies in the skin next the blister then you have celiac disease. Check out the dermatitis herpetiformis section of the forum for more info. I think I read that people with DH tend to have fewer GI symptoms.

[Mnicole1981]

You could still be gluten sensitive, however, I would expect in that case you'd have a fairly noticeable difference when stopping gluten. Maybe I'm wrong about that though.

Rashes can be due to many, many things, and even if it's the gluten dermatitis thing, I think it's still a histamine reaction, which doesn't involve the same category of antibodies as intestinal issues.

When was the last time you had an allergy test? Have you ever gone on an elimination diet?

If I were you I'd get an allergy test done for a multitude of foods and environmental factors. It might be weird things like certain food dies or preservatives that you wouldn't think to categorize as a 'food' even if you did do an elimination diet. And yes, there's a lot of guff about allergy tests, but again, like celiac disease, there aren't a lot of false positives.

I have never had one. Never done an elimination diet. How does that work?

[pricklypear1971]

They took four from the lower end of the duodenum.

Okay,

I went back and read through your posts and I want to highlight a few things.

You're anemic

You have "stool in the colon" which may in fact be pockets of stool in fissures?

You have evidence of fibroids

You have fluid in your pelvic region

You are hypothyroid, but don't know if you have Hashimotos disease

You have low vitamin d that responds to supplementation

You have asthma

You have GERD/Hiatal Hernia

You have a family history of digestive issues?

They took 4 samples on endoscopy from the 3rd part of your duodenum

Your AB Gliaden IGA and IGG are negative

You are lactose intolerant.

Did I get all of that right? You have a lot of posts with symptoms and results scattered without.

First, about the blood tests. You didn't get enough of them or all of them for Celiac disease. If you were gluten light at testing that could have influenced them. Also, you didn't get the TTG IGA/IGG which is better for patients with DH.

Second, they didn't take the biopsy from the duodenal bulb. That wasn't an optimal biopsy. https://www.celiac.com/articles/22683/1/Duodenal-Bulb-is-Shown-to-be-the-Best-Place-to-Find-Villous-Atrophy/Page1.html

Third, if you are seeing a good result (any good result) from going gluten-free then you probably have a problem with gluten. You could be Celiac, you could be NCGI. You could have another autoimmune condition that is helped by going gluten-free (good for you, because that's a better fix than most meds).

So, If you can stand a 3 month challenge go back on gluten for more blood work. If not (or if you just don't think it will be any different), don't. You need a test for Hashimoto's Disease and Graves Disease antibodies. If you have those antibodies you are at increased risk for Celiac. You also need meds for your thyroid, based on your thyroid findings.

You do need to ask your doctors what the hell is going on if this isn't it, because they haven't found anything definitive yet. Actually, I suggest a new doctor... but anyhooo.....

I think you have a heck of a lot of Celiac symptoms without positive tests - but the tests weren't thorough or optimal. I definitely think you should pursue a gluten-free diet for a while while they try to figure out what else is wrong.

[cavernio]

An elimination diet is when you avoid certain foods for a period of time (a couple of weeks maybe?) and then reintroduce them. You know you have a problem with that food if you notice it get better when you're off, and then get worse again when you're back on it.

Other alternatives include only eating something you're certain you're alright with (rice or something), and then introduce foods from that point.

[pricklypear1971]

This might be interesting to you, too.

https://www.celiac.com/articles/22483/1/Gluten-Can-Cause-GI-Symptoms-in-People-Who-Dont-Have-Celiac/Page1.html

[Mnicole1981]

Okay,

I went back and read through your posts and I want to highlight a few things.

You're anemic

You have "stool in the colon" which may in fact be pockets of stool in fissures?

You have evidence of fibroids

You have fluid in your pelvic region

You are hypothyroid, but don't know if you have Hashimotos disease

You have low vitamin d that responds to supplementation

You have asthma

You have GERD/Hiatal Hernia

You have a family history of digestive issues?

They took 4 samples on endoscopy from the 3rd part of your duodenum

Your AB Gliaden IGA and IGG are negative

You are lactose intolerant.

Did I get all of that right? You have a lot of posts with symptoms and results scattered without.

First, about the blood tests. You didn't get enough of them or all of them for Celiac disease. If you were gluten light at testing that could have influenced them. Also, you didn't get the TTG IGA/IGG which is better for patients with DH.

Second, they didn't take the biopsy from the duodenal bulb. That wasn't an optimal biopsy. https://www.celiac.com/articles/22683/1/Duodenal-Bulb-is-Shown-to-be-the-Best-Place-to-Find-Villous-Atrophy/Page1.html

Third, if you are seeing a good result (any good result) from going gluten-free then you probably have a problem with gluten. You could be Celiac, you could be NCGI. You could have another autoimmune condition that is helped by going gluten-free (good for you, because that's a better fix than most meds).

So, If you can stand a 3 month challenge go back on gluten for more blood work. If not (or if you just don't think it will be any different), don't. You need a test for Hashimoto's Disease and Graves Disease antibodies. If you have those antibodies you are at increased risk for Celiac. You also need meds for your thyroid, based on your thyroid findings.

You do need to ask your doctors what the hell is going on if this isn't it, because they haven't found anything definitive yet. Actually, I suggest a new doctor... but anyhooo.....

I think you have a heck of a lot of Celiac symptoms without positive tests - but the tests weren't thorough or optimal. I definitely think you should pursue a gluten-free diet for a while while they try to figure out what else is wrong.

I agree. I do need a new doctor. My rash was a definite indication of the disease. Unfortunately, it seemed to hit me in the summer. I really thought I was going to have answers by now. My doctor only had my FMLA going through June 5 because "we should know what is going on with you by then." Those were her words.