Endoscopy Results

[SLB5757]

I thought I would post my scope results in hopes that someone else could relate. I am already gluten free due to allergy testing positive for wheat, barley and Rye but my blood tests were negative. The scope I had done back in 04/07 didn't mention villious atrophy or anything like that - and I never asked for a copy back then because I didn't even know what Celiac disease was. Now that I know a little more I decided to request a copy. If anyone could help in deciphering I would appreciate it (I know it won't be professional advice - but maybe someone has some ideas).

RESULTS:

Duodenum Biopsy: The lamina propria is mildly distended with slightly increased lymphocytes and plasma cells, and rare eosinophils. No evidence of dysplasia, malignancy, or granulomatous disease.

Gastroesophogeal junction: The fragments of squamous mucosa show rare intraepithelial lymphocytes. The fragments of glandular mucosa shows focally moderately distended lamina propria with moderate increased lymphocytes and plasma cells. Occasional eosinophilis are also seen. Focal slight fibrosis noted. Glandular epithelium shows mild reactive changes. No evidence of intestinal metaplasia, dysplasia, or malignancy.

Diagnosis:

Nothing for the Duodenum biopsy, as far as the Gastroesophogeal biopsy goes: Moderate chronic inflamation and focal slight fibrosis.

To me this seems like a foreign language. The only thing that I could tell from googling some of those terms is that in celiac disease you can have elevated lymphocytes. And I think elevated eosinophilis meens some sort of allergic thing but I am totally a novice when it comes to looking at these results. When I asked for the scope results I was informed that the doctor who did my scope has been gone from their practice for over a year and has no forwarding information. Ugh.

[ravenwoodglass]

I thought I would post my scope results in hopes that someone else could relate. I am already gluten free due to allergy testing positive for wheat, barley and Rye but my blood tests were negative. The scope I had done back in 04/07 didn't mention villious atrophy or anything like that - and I never asked for a copy back then because I didn't even know what Celiac disease was. Now that I know a little more I decided to request a copy. If anyone could help in deciphering I would appreciate it (I know it won't be professional advice - but maybe someone has some ideas).

RESULTS:

Duodenum Biopsy: The lamina propria is mildly distended with slightly increased lymphocytes and plasma cells, and rare eosinophils. No evidence of dysplasia, malignancy, or granulomatous disease.

Gastroesophogeal junction: The fragments of squamous mucosa show rare intraepithelial lymphocytes. The fragments of glandular mucosa shows focally moderately distended lamina propria with moderate increased lymphocytes and plasma cells. Occasional eosinophilis are also seen. Focal slight fibrosis noted. Glandular epithelium shows mild reactive changes. No evidence of intestinal metaplasia, dysplasia, or malignancy.

Diagnosis:

Nothing for the Duodenum biopsy, as far as the Gastroesophogeal biopsy goes: Moderate chronic inflamation and focal slight fibrosis.

To me this seems like a foreign language. The only thing that I could tell from googling some of those terms is that in celiac disease you can have elevated lymphocytes. And I think elevated eosinophilis meens some sort of allergic thing but I am totally a novice when it comes to looking at these results. When I asked for the scope results I was informed that the doctor who did my scope has been gone from their practice for over a year and has no forwarding information. Ugh.

The stuff that I bolded may be indicative of celiac. Have you gotten any relief from the diet?

[SLB5757]

Ravenwoodglass -

Hello. Hope your night is going well (it's beautiful here in Ohio)

I started the gluten-free diet on about 5/19 with just rice and grilled chilcken and rice chex and felt good for the first week maybe. Then I started feeling kinda the same as before the gluten-free diet. I was still eating items that had high likelyhood of cross contamination without realizing it (chips, breakfast out with family, mcdonalds burger with no bun...etc etc etc). On Monday of this week I decided to challenge myself with a subway sandwich to see if it really was wheat/gluten that I am intolerant too. I had two days following that episode where my stomach bloated immensly, I had the sharp left sided pain, the anxiety was back, and I wasn't able to pass gas and just felt generally terrible and unwell. Half of yesterday and today I have had diarreah (hoping my body is clearing it out and I am on the mend from the gluten episode). I went back to plain rice and chicken and some gluten-free pretzles from the health food store and finally this evening I am feeling normal again. I have the diah still but it's slowed down and my stomach is no longer "churning".

I have realized that I Cannot do gluten or lactose. If I avoid these two items I seem to be 90% better than I have ever felt. I thought some of the stuff in that scope seemed to be possible of a person who had a gluten intolerance or sensitivity that was untreated.

At the time of the scope I had been gluten free for about a month (I had no clue about Celiac at the time. They did the scope because I was down to 92 lbs and they were running every test imaginable to see why. I told them at that time I had only been eating rice, applesauce and ensure for a month and had had diarreah for a month at time of scope. I know now - only through these boards that my scope wouldn't have shown much due to the gluten-free diet that I had been having even without knowing. The docs didnt mention eating gluten before bc they werent looking for that.)

So basically even on a month gluten-free diet - my scope showed those results.

[SLB5757]

Still praying my stomach stops hurting/reacting from the sandwhich I ate on Monday I don't know why I even tried it I need an official diagnosis and need to find a doc in my area who is knowledgeable to diagnose. I have many more issues than just tummy issues that I need to resolve and I need to be sure that my children do not end up with the same problems as I have had over the years if they are by chance Celiac. My biggest concerns at the time are tummy acting like it is revolting against me and my teeth issues. My teeth are in constant pain. I have always been a "brush every day and listerene" kind of girl, always get regular check-ups and cleanings, but have ALWAYS had the worst teeth imaginable. My dentist at 18 swore I was bulemic because of the condition of my enamel and having to pull a molar in the back of my mouth. Now at 32, I have a molar in the back that needs root canal treatment because it is partially broken off, I have another in the mid right top area that is broken off and needs a fake tooth put in, and have a molar on the other side that has randomly broken down so far - almost inside the gum. I can't keep taking off work for medical/dental issues - and yet my docs always say - you have IBS - your perfectly healthy. I am NOT feeling healthy at 32 with my stomach and dental issues.

I don't know how much more of this I can do. Pain is not fun.

[ravenwoodglass]

Still praying my stomach stops hurting/reacting from the sandwhich I ate on Monday I don't know why I even tried it I need an official diagnosis and need to find a doc in my area who is knowledgeable to diagnose. I have many more issues than just tummy issues that I need to resolve and I need to be sure that my children do not end up with the same problems as I have had over the years if they are by chance Celiac. My biggest concerns at the time are tummy acting like it is revolting against me and my teeth issues. My teeth are in constant pain. I have always been a "brush every day and listerene" kind of girl, always get regular check-ups and cleanings, but have ALWAYS had the worst teeth imaginable. My dentist at 18 swore I was bulemic because of the condition of my enamel and having to pull a molar in the back of my mouth. Now at 32, I have a molar in the back that needs root canal treatment because it is partially broken off, I have another in the mid right top area that is broken off and needs a fake tooth put in, and have a molar on the other side that has randomly broken down so far - almost inside the gum. I can't keep taking off work for medical/dental issues - and yet my docs always say - you have IBS - your perfectly healthy. I am NOT feeling healthy at 32 with my stomach and dental issues.

I don't know how much more of this I can do. Pain is not fun.

Hang in there. ((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))

It seems you have had a full blown reaction to the gluten challenge you did. It will pass. Do you have any of the liquid pepto bismal? If it is something you can take it might help with the stomach pain.

I know about the teeth issues and it makes me so angry that so many dentists don't understand or even know about celiac disease and dental issues. I can sympathize and wish I could give some advice on that issue but I have the same sort of tooth issues. Many of us do end up with a lot crowns. It is important that those issues be taken care of. One suggestion I do have is to see if you can find a dentist that does sedation dentistry. They can knock you out and get everything done at once to minimize the amount of visits. They are also helpful if you have a fear of dentists.

One thing that may work for diagnosis is this. You have been seeing a lot of different doctors for a lot of different problems. If you are celiac you will likely see those issues resolve on the diet. Some doctors will diagnose under those circumstances.

I hope you feel better soon.

[gfb1]

[snip]

RESULTS:

Duodenum Biopsy: The lamina propria is mildly distended with slightly increased lymphocytes and plasma cells, and rare eosinophils. No evidence of dysplasia, malignancy, or granulomatous disease.

Gastroesophogeal junction: The fragments of squamous mucosa show rare intraepithelial lymphocytes. The fragments of glandular mucosa shows focally moderately distended lamina propria with moderate increased lymphocytes and plasma cells. Occasional eosinophilis are also seen. Focal slight fibrosis noted. Glandular epithelium shows mild reactive changes. No evidence of intestinal metaplasia, dysplasia, or malignancy.

Diagnosis:

Nothing for the Duodenum biopsy, as far as the Gastroesophogeal biopsy goes: Moderate chronic inflamation and focal slight fibrosis.

To me this seems like a foreign language. The only thing that I could tell from googling some of those terms is that in celiac disease you can have elevated lymphocytes. And I think elevated eosinophilis meens some sort of allergic thing but I am totally a novice when it comes to looking at these results. When I asked for the scope results I was informed that the doctor who did my scope has been gone from their practice for over a year and has no forwarding information. Ugh.

excellent work to get copies of all test results. i usually scan them and keep them somewhere like zoho/google docs/box.net -- or even Open Original Shared Link . this allows me to have access to all the families medical records from anywhere (and if a doc wants them, i can provide direct access -- or see them from her/his office).

your results show signs of irritation/inflammation -- but, no direct evidence of celiac (or, anything else).

just a brief comment on lactose intolerance. most people ascribe reactions to dairy products as being lactose intolerant -- but, esp amongst celiacs, i would caution that it might be casein in the milk (the protein portion) and NOT the lactose (or predominant sugar). an easy way to test this is to drink some goat or sheeps milk (which has a different type of casein, but loads of lactose) OR to try some non-dairy whipped topping (which has loads of casein, and very little lactose!!)....

the reason is that lactose intolerant folks are missing an enzyme that digests lactose; while casein-related problems are usually due to the same kind of antibody/immune response that occurs against gliadin/gluten. in general, people don't have an immune response to a sugar.

[SLB5757]

excellent work to get copies of all test results. i usually scan them and keep them somewhere like zoho/google docs/box.net -- or even Open Original Shared Link . this allows me to have access to all the families medical records from anywhere (and if a doc wants them, i can provide direct access -- or see them from her/his office).

your results show signs of irritation/inflammation -- but, no direct evidence of celiac (or, anything else).

just a brief comment on lactose intolerance. most people ascribe reactions to dairy products as being lactose intolerant -- but, esp amongst celiacs, i would caution that it might be casein in the milk (the protein portion) and NOT the lactose (or predominant sugar). an easy way to test this is to drink some goat or sheeps milk (which has a different type of casein, but loads of lactose) OR to try some non-dairy whipped topping (which has loads of casein, and very little lactose!!)....

the reason is that lactose intolerant folks are missing an enzyme that digests lactose; while casein-related problems are usually due to the same kind of antibody/immune response that occurs against gliadin/gluten. in general, people don't have an immune response to a sugar.

Great idea about google docs - I will start doing that as well since my whole life seems to be electronic THANKS.

As far as the scope goes - I had been gluten-free for a minimum of a month before it - so I am sure it wouldn't have shown too much with regards to celiac. It was done before I even knew about celiac disease or gluten intol. I had been sick for a month with diah and not eating (lost 10 lbs. in a month). So I am sure it's not too reliable anyhow

As far as the lactose/casein issue. I just stay away from cheese and milk all together. I buy lactaid for cereal but that is used rarely. My allergy testing showed a "0" for Casein where as everything else showed 4++ high reactions - so I hope that proves that casein isn't an issue. I get alot of gas and diah when I consume lactose - so I think that's the problem. Just my novice brain though...so who really knows.

I'm beginning to think I will never truly know what the issues are with me. I will only have to suck it up and deal with daily pain as a way of life. I feel better today - just not 100% (but then again what is 100% - it's been so long since I felt 100%).