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I'm Back And I Think I'm As Close As I'm Ever Gonna Get To A Dx

txplowgirl

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txplowgirl Enthusiast
txplowgirl
Posted

Hi everyone, I use to be on here almost everday for a long time but the crazyness of not knowing if I had Celiac or not and my SO not believing it I went back to eating gluten after being gluten free for several years, loosing weight and feeling lots better.

 

Well, since I been here I went back to being sick, gained back all the weight I had lost and have been dx'd with Lupus/Conective Tissue Disease, with Fibro type symptoms, Chronic Fatigue Syndrome, Rynauds Syndrome, Degenerative Disc Disease, Endometriosis, Chronic Anemia and the really big one Severe Erosive Gastritis.

 

Here a while back I kept getting sicker and sicker and I wound up in the hospital with a Lupus/Connective Tissue Disease flare and I had lost so much blood that I wound up needing a blood transfusion.

 

While I was in they wanted to track down the bleeding so my dr contacted the hospitals gastro dr and he came in to talk with me and since he was going to do a Endo and Colonosopy on me I asked him to take enough biopsies to check for Celiac disease. I told him that I definetly had symptoms of when I ate gluten but that none of the blood tests showed I had it, So he said he would check.

 

Well, this is what my official paperwork says.

 

Gastric Antral Biopsies:

     Superficial fragments of gastric antral mucosa with severe hemorragic erosive gastritis and vascular congestion.

      Negative for tumor, Immunohistochemical stain for Helicobater negative.

      Several biopsies taken shows villi has slight blunting which is indicative of mild gluten sensitivity.

 

That's it. So, for the old timers here. SHould I consider this Celiac Disease? When I talked to the gastro dr he was like the villi wasn't destroyed so I don't consider you to have Ciliac. But until you get your gastritis under control I would avoid gluten if I were you. Arrggghhh!

  Just frustrating but I guess I need to be gluten free no matter who gives me crap about it.

 

Guess I need to redo my signature post down below.

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kareng Grand Master
kareng
Posted

Some things to consider and maybe show the doctor

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txplowgirl Enthusiast
txplowgirl
Posted
  • Author

Grrr, Kareng,

 

That just kind irritated me just a bit more. The first 1 seemed to go a good way towards being Celiac and the second just blew it out of the water because it could be something else. :wacko:  But the 1 thing that sticks out is my immune system. Lupus, Connective Tissue Disease, Rynauds and other stems from immune problems plus gastro problems.

 

Geeze Louise, I need to be gluten-free but it's gotten to be such a darn hassle plus my depression dosen't help matters as well as stressors on top of everything.

 

But do appreciate the help Karen.  Thank you.

nvsmom Community Regular
nvsmom
Posted

(hugs) You've dealt with a lot.  :(

 

I would advise you to go gluten-free. You "could" be a celiac, have symptoms, have other autoimmune problems so are more likely to have celiac, and many of the diseases you are dealing with tend to respond positively to a gluten-free diet even when the patient is not a celiac because it can reduce inflammation.

 

You might as well go gluten-free again. I know it's a hassle and can be difficult when you feel so poor, but it could help you feel better withing a few weeks or months.

 

Best wishes.

GFinDC Veteran
GFinDC
Posted

Hi Txplowgirl,

 

Your improvement when gluten-free plus villi blunting sure seem like strong indicators of celiac to me.  Not having total villi destruction as a criteria for celiac is wrong.  The Marsh scale rates villi damage at various levels, and not just as the worst damage.  Your GI doc should be able to tell you your Marsh scale rating.  For that matter, he should give you a copy of the results for your records.  You may need them if you end up going to real gastroenterologist someday.

Takala Enthusiast
Takala
Posted

.... slight villi blunting....

 

I love these doctors who won't diagnose officially, until you are at least 3/4 dead already.  <_<

psawyer Proficient
psawyer
Posted

I love these doctors who won't diagnose officially, until you are at least 3/4 dead already.  <_<

Me too.
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