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BostonCeliac Apprentice
BostonCeliac
Posted

Just thought I would share with everyone... My Doctor just let me know that my biopsies came back showing "classic unambiguous Sprue" as he put it. He mentioned that when he was doing the endoscopy he "saw it" but I was so out of it, I couldn't remember exactly what he said...

Anyway, I'm relieved, it would have been frustrating if it was negative. It's strange - I only had stomach issues beginning approx. 2-3 months prior to the biopsy. I have had unexplained anemia for about 6 years -- but I would have thought the damage to the intestines would have caused more problems. I knew right away what it was because my sister was diagnosed, and they thought I might have it.

Well, I've been gluten-free for 3 weeks today! So far so good... here's to a life of gluten-free living!

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queenofhearts Explorer
queenofhearts
Posted

Congratulations & Welcome to Celiac World!

ravenwoodglass Mentor
ravenwoodglass
Posted
Just thought I would share with everyone... My Doctor just let me know that my biopsies came back showing "classic unambiguous Sprue" as he put it. He mentioned that when he was doing the endoscopy he "saw it" but I was so out of it, I couldn't remember exactly what he said...

Anyway, I'm relieved, it would have been frustrating if it was negative. It's strange - I only had stomach issues beginning approx. 2-3 months prior to the biopsy. I have had unexplained anemia for about 6 years -- but I would have thought the damage to the intestines would have caused more problems. I knew right away what it was because my sister was diagnosed, and they thought I might have it.

Well, I've been gluten-free for 3 weeks today! So far so good... here's to a life of gluten-free living!

I am glad you now know for sure and for certain. Welcome to the family.

floridanative Community Regular
floridanative
Posted

I had anemia just over a year before my dx but I too was surprised that my biospy showed so much damage and I didn't have the GI symptoms except for very occasional bloating or a stomach ache that coule be explained by a spicey Mexican dinner or so I thought - lol!

I can say that after almost 8 months, living gluten free really is just second nature to me now. I never thought I'd get use to reading labels or paying a small fortune for gluten-free food but I did. I just have a new normal now and since I feel better than ever (without knowing I didn't before) I can't complain.

I should add that about a month in to eating gluten free, I got very overwhelmed that I had to do this forever. That feeling passed fairly quickly (less than a week) and each month since has just gotten better and better.

Welcome and good luck!

Guest ~jules~
Guest ~jules~
Posted

Hello, and welcome to the group....My doctor also said more or less he could tell it was sprue, but he needed the biopsies back to say for sure. This group has been very helpful to me since my diagnosis last month, and I think your really going to find this a great resource, and place for support when you are feeling the need to vent, everyone is great! Welcome again! Julie :D

jcc Rookie
jcc
Posted

Congratulations on receiving your gold star! You may not feel lucky, but it is great when the diagnosis is clear cut. Best of luck with your gluten free life...you will do fine!

Cara

BostonCeliac Apprentice
BostonCeliac
Posted
  • Author

Thanks for the comments everyone! I've already found this site EXTREMELY helpful -- we're lucky to have this.

FloridaNative --- looks you were the same as me, did you notice a big change when your iron levels got back to normal? How long did it take you? Also, thanks for the heads up about the 1-month mark 'freak out', I could definitely see myself getting to that point, and then just taking a deep breath & realizing, It's not that bad! It's just food!! :)

Have a great day everyone....

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      Shingles - Could It Be Related to Gluten/ Celiac

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      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
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      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      GI DX celiac despite neg serology and no biopsy

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      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
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      Shingles - Could It Be Related to Gluten/ Celiac

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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
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