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Please Help- Newly Diagnosed

taffers

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taffers Newbie
taffers
Posted

Due to some skin conditions and years of infertility, I made my GI order the celiac disease bloodwork panel. Unfortunately, the doctor had the nurse call me back, who did not seem exceptionally knowledgeable on celiac disease. She said the pathology came back fine, but that I tested positive for "Celiac Sprue". She did not seem to know what that meant (and I certainly don't!). I thought she would explain the different things I was tested for, but she did not. She seemed to take it pretty lightly, saying "it's just a little allergy" and "you just need to watch your diet". Does anyone know what it means that I "tested positive for celiac sprue"?

Thank you!

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Dixiebell Contributor
Dixiebell
Posted

That is what some Dr.s call celiac disease. Looks you tested positive for it. Make sure to get copies of your blood work from the Dr.

mushroom Proficient
mushroom
Posted

Hi, and welcome to the forum.

Celiac "sprue" is the old term for celiac disease. Your results indicated that you have it, I am sorry to say. You should make an appointment with your doctor to discuss these results (and get a copy of them). Normally GI's like to do an endoscopy with biopsies to confirm the diagnosis. It is up to you whether or not you go ahead with the biopsy. I think it is a bit poor to have the nurse (especially, it seems, an uninformed one) give you the results. "just a little allergy" indeed!!! And 'watch your diet"!!

frieze Community Regular
frieze
Posted

Due to some skin conditions and years of infertility, I made my GI order the celiac disease bloodwork panel. Unfortunately, the doctor had the nurse call me back, who did not seem exceptionally knowledgeable on celiac disease. She said the pathology came back fine, but that I tested positive for "Celiac Sprue". She did not seem to know what that meant (and I certainly don't!). I thought she would explain the different things I was tested for, but she did not. She seemed to take it pretty lightly, saying "it's just a little allergy" and "you just need to watch your diet". Does anyone know what it means that I "tested positive for celiac sprue"?

Thank you!

please keep in mind that the woman might not be a nurse at all! In fact, you might ask her next time if she is or not...

SaraKat Contributor
SaraKat
Posted

Did they tell you to get an endoscopy too or have a follow up appt? Welcome to this site, I have found it amazing since I have been diagnosed (in the fall).

Sounds like you def have it, but usually they will want to biopsy the intestine too to see the damage.

The diet isn't that bad, it takes some learning at the beginning, but once you know what you can and can't have it really isn't bad.

taffers Newbie
taffers
Posted
  • Author

I found it odd as well. I thought she would recommend an endoscopy. I actually had a colonoscopy done on Monday, and she did put in the report that she wanted to look at my biopsy results from an endoscopy I had done 3 years ago, but if that showed evidence of celiac disease, and they never told me about it, we have a big problem!!

Thank you for your responses!

mushroom Proficient
mushroom
Posted

This gets stranger and stranger. You tested positive for celiac, and she did a colonoscopy (but no endoscopy) and she wants to check your biopsy from 3 years ago??? :unsure:

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HMReiss Newbie
HMReiss
Posted

I would really think about changing your doctors! The best thing you can do now is research on your own about celiac. This website is a great resource, there are some others and books as well. Match as many of your symptoms to celiac as possible. Write them down and go into your doctors office armed with the information and demand further testing and information. I am a chef who specializes in special diets (ironic I know) so figuring out the gluten-free diet for me was easy, but if you are not sure perhaps booking an appointment with a nutritionist who is familiar with gluten free diets might be very helpful.

On a hopeful note it took me 7 months to get pregnant with my daughter and I was always suffering hormonal issues. Now I am all better on the hormone front and notice a huge difference. I also know someone who had infertility issues who found out she was celiac and went gluten-free. She is now pregnant. Hope it works out and all the best!

taffers Newbie
taffers
Posted
  • Author

This gets stranger and stranger. You tested positive for celiac, and she did a colonoscopy (but no endoscopy) and she wants to check your biopsy from 3 years ago??? :unsure:

I had an endoscopy 3 years ago because I was having very bad stomach pains and cramps. After it was over, she said all she found was pre-ulcers. She did do biopsies, but no one ever called me with results, and I never followed up because I didn't even know about celiac disease back then!

The colonoscopy was done for unrelated issues, but I insisted that she order the b/w panel for celiac disease (because of my skin issues) so after my colonoscopy, I inquired as to my b/w results (again, no one called me) so THAT is why she listed in the colonoscopy report that she should look at my endoscopy results from 3 years ago.

I'm going to make an appointment with a different doctor today. I'm just sick of going to doctors all the time!!!

taffers Newbie
taffers
Posted
  • Author

HMReiss: I actually did finally get pregnant about 2 years ago after over 3 years, 4 IUIs and 4 IVFs. We thought we could never have another one (I refuse to do any further ivfs), but now I'm wondering if it may be possible. Of course, I've been gluten-free for over a month now, and I really haven't noticed much of a difference. :(

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