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Celiac Versus Gluten Sensitive Enteropathy
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6 posts in this topic

Hello,

My name is Lynette, I am 29, live in Australia, married and have one child.

I have been given two different diagnosis from one biopsy result. I would really appreciate if you could shed some light, or maybe clarify the situation.

In 2000, I was diagnosed with Hashimotos. To this day, it has not settled down. In January this year, I went to a new G.P. who went through my history and symptoms and ran a few blood tests. From these tests, I tested positive for antiendomysal antibodies. Foolishly I then went off gluten for a couple of months and started to feel better. I then decided I could not live the rest of my life following such a strict diet unless I had to, so I went back on a gluten diet for 4 weeks to have a biopsy to confirm a diagnosis. I had the biopsy, discovered I had grade 2 reflux and waited for the results. I went to my G.P. who said I had Gluten Sensitive Enteropathy - which he explained was the same as Celiac but not anywhere near as severe (I am finding it very difficult to find informationt to colaborate this). I then received a letter from the gastro that performed the biopsy saying I had Celiac disease. I rang the gastro and told her what the G.P. had told me and she said to me that if I were her patient, she would treat me as though I have Celiac disease. She told me to take the letter to the G.P. and show him her diagnosis and that my siblings also needed to be tested. I took the letter to the G.P. who then said he didn't actually know if it was Celiac disease at this stage as the changes in the biopsy were only mild.

The summary part of my biopsy results reads:

"small intestinal mucosa - intraepithelial lymphocytosis consistent with gluten sensitivity."

Sorry for the length of this post. I would be greatly appreciative of someone could clear some of my current confusion. At present, I don't know whether to answer yes or no when someone asks me if I have Celiac disease.

Kind Regards,

Lynette

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Given the results you have it really doesn't matter if you "officially" have celiac. If you don't have it now you will have it if you keep eating gluten. If you don't yet have celiac now, what you do have is the stage before your small bowel is so damaged that you do officially have celiac.

Some doctors consider this stage celiac even if it doesn't fit the the clinical description and that could be what's happening with your doctors. Or it could be you're right on the line and so the different doctors have different opinions.

From what you've told us I think the bottom line is the same, you have to go gluten-free.

richard

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I think it means that your intesetines were not damaged enough probably because you had been gluten-free and they are just going to keep getting damaged and then you will be diagnosed as clinically having celiac disease, but you don't need to go thhrough that. Go completely gluten-free and you will probably feel 100 times better.

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Thank you for your replies. I started telling people I didn't have celiac, but it was something similar (gluten sensitive enteropathy) and I don't think a lot of people believed me. A lady who has celiac (from a family of celiacs), proceeded to tell a group of friends that she is quite sure there is no such thing as gluten sensitive enteropathy. She believes it is celiac or nothing, therefore I don't have any need to be gluten free.

I have found it much easier to tell people I have celiac disease. I have found community awareness of celiac is much better than gluten sensitive enteropathy. Most people understand what celiac is to some degree. I just didn't want to feel like a fraud telling people I had celiac if I didn't really. Considering I have to be gluten-free for the rest of my life, and the gastro diagnosed celiac, it is probably much simpler to use the term celiac to those who are less educated on the matter.

Again, thank you for your help.

Kind Regards,

Lynette

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Hi sperlyn,

You do have Celiac, it is just in the early stages. Here it is also called gluten intolerance, and sometimes gluten sensitive enteropathy. It just means that gluten is causing damage in your intestines. Some doctors won't call it Celiac, yet. Regardless, it still requires lifelong adherence to the gluten free diet. Since you had been gluten free for a time before the biopsy, it most likely altered your results. But you are very fortunate that they looked at the cellular level and saw the increase in the intraepithelial lymphocytes. Here in the US that is not standard practice and this was not done for me at my biopsy. I had also been gluten free before hand and had minimal damage, so they said "NOT Celiac". Don't feel bad about telling people that you have celiac. Gluten sensitive enteropathy is just another name for the same thing.

I have found community awareness of celiac is much better than gluten sensitive enteropathy. Most people understand what celiac is to some degree.

You are also very fortunate to live in a community that does know about Celiac. This is not the case here in the US. Most people have never heard of celiac and don't know what gluten is. I've even run into people who don't realise that the flour they cook with is made from wheat! I'm not sure what they think it is, but it sure is wheat! We are starting to get more press time in regards to Celiac Disease and gluten intolerance, but are a long way away from most people having heard of the disease.

God bless,

Mariann

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Just remembered that here in the states gluten sensitive enteropathy is simply another name for celiac.

richard

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