Endoscopy Results "possible Celiac"

[lorah322]

I know that you either have celiac or you don't... but let me explain my situation. I went gluten free back in September because I had horrible eczema/itchy blisters on my hands. To my amazement, my hands cleared up! I figured I had a gluten intolerance and the thought of being a celiac did not cross my mind. When I began having stomach problems, my doctor told me I had gastritis and immediately put me on prescription antacids. I DO NOT like taking medications, so I was not happy about that! After talking to a gastroenterologist about it, he too wanted me to go on the medicine, so I did. When the medicine was not agreeing with me, I insisted on having some testing done, so I can know for sure what the problem is. Right before the endoscopy I asked to be tested for celiac. He told me that my duodenum looked fine, but he did the biopsy since I asked.

Now I know that being gluten free before testing will probably make for a negative result, however I had done quite a bit of cheating on my diet the 2 weeks prior to the test. One weekend I was visiting my grandparents, and I did not worry about my diet the whole time I was with them. And even the night before my test I was out to dinner with my husband and I had some of the bread they brought to the table.

I have my follow up appointment with my doctor next week, but I am wondering if anyone might have information or thoughts on what 'possible celiac' might mean. If I am celiac, I will not do anymore of that cheating for sure!

Oh, and I do have some inflammation in my stomach, but as long as I don't have discomfort on a daily basis, I was told I could just try to manage with home remedies.

I look forward to hearing any thoughts!

[Razzle Dazzle Brazell]

I know that you either have celiac or you don't... but let me explain my situation. I went gluten free back in September because I had horrible eczema/itchy blisters on my hands. To my amazement, my hands cleared up! I figured I had a gluten intolerance and the thought of being a celiac did not cross my mind. When I began having stomach problems, my doctor told me I had gastritis and immediately put me on prescription antacids. I DO NOT like taking medications, so I was not happy about that! After talking to a gastroenterologist about it, he too wanted me to go on the medicine, so I did. When the medicine was not agreeing with me, I insisted on having some testing done, so I can know for sure what the problem is. Right before the endoscopy I asked to be tested for celiac. He told me that my duodenum looked fine, but he did the biopsy since I asked.

Now I know that being gluten free before testing will probably make for a negative result, however I had done quite a bit of cheating on my diet the 2 weeks prior to the test. One weekend I was visiting my grandparents, and I did not worry about my diet the whole time I was with them. And even the night before my test I was out to dinner with my husband and I had some of the bread they brought to the table.

I have my follow up appointment with my doctor next week, but I am wondering if anyone might have information or thoughts on what 'possible celiac' might mean. If I am celiac, I will not do anymore of that cheating for sure!

Oh, and I do have some inflammation in my stomach, but as long as I don't have discomfort on a daily basis, I was told I could just try to manage with home remedies.

I look forward to hearing any thoughts!

If that was on your endoscopy report I would imagine that your doctor will go ahead and diagnose you. I am not a vet but idt i ever heard an ambiguous report to say "possible celiac" before.

[Skylark]

When you see your doctor, get a copy of the biopsy report and post it here. Many doctors misinterpret biopsies that aren't obviously celiac and we can help you understand it. Really, any damage at all after this long gluten free would be a really strong evidence for celiac. Plus the itchy blistered rash on your hands that cleared up gluten-free sounds like dermatitis herpetiformis, the celiac rash.

[lorah322]

Okay, So I had my follow up appt. today and it says:

"Small bowel mucosa with slightly increased intraepithelial lymphocyes."

I still don't know wether or not I am positive for celiac, but the doctor said based on my history it all 'fits together'. However he did not make an official diagnosis. Guess I feel about as confused as I did before. I hesitate to call myself celiac with no official diagnosis.

Any thoughts?

[Skylark]

Increased intraepithelial lymphocytes (IELs for short) are white blood cells that have migrated to your intestine in response to inflammation. They are not normally there. They are the first step in developing celiac disease. There are other things that can cause increased IELs to appear in a biopsy so doctors won't diagnose if that's the ONLY sign of celiac. You can get increased IELs with infections, food intolerances, or H. pylori infections as well as celiac. Thing is, you've been gluten-free for quite a while. This could be "leftover" inflammation as your gut heals from damage. Horribly itchy blisters really sounds like dermatitis herpetiformis, the celiac rash. Did you have any blood testing done while you were still eating gluten?

As your doctor says, if you have a lot of symptoms that really improved off gluten you probably are celiac. Don't be frustrated about not getting a clear answer from your doctor, though. He really can't diagnose firmly from only increased IELs in your biopsy. As your doctor says, it really does "fit together".

I'll be curious to see what other board members think but I think you're probably celiac. It kind of depends on how you do on the diet and how well your Dr. can rule out other causes for increased IELs.

[beachbirdie]

When you see your doctor, get a copy of the biopsy report and post it here. Many doctors misinterpret biopsies that aren't obviously celiac and we can help you understand it. Really, any damage at all after this long gluten free would be a really strong evidence for celiac. Plus the itchy blistered rash on your hands that cleared up gluten-free sounds like dermatitis herpetiformis, the celiac rash.

I think I recall reading somewhere (but don't have the time to go dig it up right now) that people with dermatitis herpetiformis often do not have severe intestinal damage. Do you know anything about that?

It would mean that in this case, the OP might have a VERY high likelihood of celiac, considering the rash cleared up gluten free. Is that reasonable thinking?

[lorah322]

Thank you so much for your response Skylark. I think I am more frustrated with myself for 2 reasons.

1. Because I went gluten free without any diagnosis. But in my defense, I find that most doctors try to treat my symptoms rather than find the cause. I didn't even start seeing a GI doctor for this reason, it was something else entirely. So I guess I was also uneducated about who might be able to help me.

2. I feel like if I don't have a clear diagnosis, family members won't take me seriously. Well, I just need to get over that!!!!

If gluten free works for me, then I just need to go with it! I am glad there are forums like this available for all of us to support each other! He is doing some bloodwork to check iron levels and such. I will be curious to know if I am deficient in any vitamins or minerals. He really is a nice doctor and very supportive, so am am fortunate to have stumbled upon him.

[beachbirdie]

Okay, So I had my follow up appt. today and it says:

"Small bowel mucosa with slightly increased intraepithelial lymphocyes."

I still don't know wether or not I am positive for celiac, but the doctor said based on my history it all 'fits together'. However he did not make an official diagnosis. Guess I feel about as confused as I did before. I hesitate to call myself celiac with no official diagnosis.

Any thoughts?

I think your doc called it well. He thinks it is all consistent with celiac but can't make an official diagnosis based on accepted criteria.

I don't see a problem with joining the ranks of many here who have healed and thrived once they went gluten-free. The only other thing to do is get back on gluten and eat it until you are really, really sick.

Not sure I'd take that option!

As for your family, you can tell them you're diagnosed. They don't need to see your lab reports.

I'm not a doctor. This is just the not-so-educated opinion of a layperson.

[Skylark]

Thank you so much for your response Skylark. I think I am more frustrated with myself for 2 reasons.

1. Because I went gluten free without any diagnosis. But in my defense, I find that most doctors try to treat my symptoms rather than find the cause. I didn't even start seeing a GI doctor for this reason, it was something else entirely. So I guess I was also uneducated about who might be able to help me.

2. I feel like if I don't have a clear diagnosis, family members won't take me seriously. Well, I just need to get over that!!!!

If gluten free works for me, then I just need to go with it! I am glad there are forums like this available for all of us to support each other! He is doing some bloodwork to check iron levels and such. I will be curious to know if I am deficient in any vitamins or minerals. He really is a nice doctor and very supportive, so am am fortunate to have stumbled upon him.

I went gluten-free on my own too. I had the same problem you did, where nobody suspected celiac. This was well before celiac was in the news so doctors weren't thinking of it, but I still had an awful lot of symptoms for them to miss it. I am not willing to poison myself for even a blood test. Maybe eventually there will be testing that doesn't' require eating gluten.

As for your family, you have a biopsy that is abnormal so they really can't write this off. It's NOT in your head that there is a reasonable chance you are celiac. Agreed that if you can get over being insecure with your family it will be much easier!

[squirmingitch]

I think I recall reading somewhere (but don't have the time to go dig it up right now) that people with dermatitis herpetiformis often do not have severe intestinal damage. Do you know anything about that?

It would mean that in this case, the OP might have a VERY high likelihood of celiac, considering the rash cleared up gluten free. Is that reasonable thinking?

beachbirdie remembers correctly. Ppl with dh tend to have less damage to the intestines & therefore harder to diagnose by endoscopy. Also ppl with dh tend to turn up neg. on the celiac blood panel more than celiacs w/o dh.

And I'm going to make a note here just for future readers that even for a biopsy of the dh lesions you have to be actively consuming gluten just like for all the other celiac tests. Even when done properly the false neg. rates on the dh biopsy runs 37%; even when the patient has not stopped consuming gluten.

[ravenwoodglass]

Okay, So I had my follow up appt. today and it says:

"Small bowel mucosa with slightly increased intraepithelial lymphocyes."

I still don't know wether or not I am positive for celiac, but the doctor said based on my history it all 'fits together'. However he did not make an official diagnosis. Guess I feel about as confused as I did before. I hesitate to call myself celiac with no official diagnosis.

Any thoughts?

Even after some time gluten-free you are still showing some damage. Your doctor thinks it all fits. I would not hesitate to call myself celiac. Your doctor may in some ways also be doing you a favor insurance wise since if you are ever without insurance you won't have 'celiac' as a preexisting condition. Your doctor could also give you your 'official' diagnosis if you really feel you need one if you go back in 6 months to year for a re-scope and he finds the diet has healed you.

[beachbirdie]

beachbirdie remembers correctly. Ppl with dh tend to have less damage to the intestines & therefore harder to diagnose by endoscopy. Also ppl with dh tend to turn up neg. on the celiac blood panel more than celiacs w/o dh.

And I'm going to make a note here just for future readers that even for a biopsy of the dh lesions you have to be actively consuming gluten just like for all the other celiac tests. Even when done properly the false neg. rates on the dh biopsy runs 37%; even when the patient has not stopped consuming gluten.

thanks much, squirmingitch! Wish I could find my way back to what I read