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Gastroparesis And Celiac Disease - 16 Years Of Torture - Could I Have Both?

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search4answers Newbie
search4answers
Posted

I have been diagnosed with a disease called Gastroparesis (delayed gastric emptying)...that diagnosis took 5 years...YET, I have not had the results the doctors claim I should have had with their treatments (meds, etc)...I have been ill for 16 years and continue to suffer with what I now believe may be the symptoms of Celiac disease...or at least some form of it. I have C and D, gas, severe abdominal pain, nausea, and vomiting. I have not broached the subject of Celiac disease with my current doctor (I think he is number 10 or 15 - I have lost count)....but have decided to try a gluten-free diet for a while to see if I get any relief. I have been on it for just a few days, but so far, not much has changed. I don't really know what to expect...especially considering I am dealing with the Gastroparesis. I know the people here are not doctors, but likely they are more experienced than any doctor I could ever see!! Can anyone advise me on what I should be seeing at this point as far as results...OR if I should be tested BEFORE I begin any of this? I noticed in some of the posts about being "on gluten" at the time of testing...and I don't want to screw up any chances of getting an actual diagnosis IF this is Celiac disease...I have had enough problems with doctors believing me (if only they could live in my body!)...and I don't want to try one more thing on them and get a "false" result. ANY and ALL advice welcomed!!! Thank you very much for having a place of help!!

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RollingAlong Explorer
RollingAlong
Posted

You may want to check into the Bernstein Diabetes forum; there are several people with gastroparesis there.

Jenniferxgfx Contributor
Jenniferxgfx
Posted

I have been dx'd with gastroparesis. It started out as gall bladder pain and when they did a scope, they found undigested food, despite fasting. Said my pain was from the GP, gave me Reglan and shoved me out the door. 3 years later, I'm thinking my doctor screwed me and shoulda looked into celiac.

My dinner sits like a brick when it contains gluten and/or ive eaten a lot of pasta or bread recently.

I'm seeing a gastro tomorrow to talk about celiac but I'm going gluten-free no matter what. I've had gut pain and other celiac symptoms for most of my life. I'm angry no one tested me sooner.

domesticactivist Collaborator
domesticactivist
Posted

If you want to be able to get a diagnosis of celiac disease or at all trust a negative result DO NOT GO GLUTEN FREE YET!!! Many people find they become more sensitive to gluten after they go off it, and the 6 weeks of eating 4 slices of bread a day necessary to hope for accurate results would be unbearable after they've gone gluten-free for a while.

You should eat a lot of gluten and get a full celiac panel done. The best explanation I have found for a full celiac panel is at:

Open Original Shared Link

Even if it comes back negative, you may want to try the diet to see if it helps - the only one in our family with celiac is our son, but we have all benefited from being gluten-free (and on GAPS, but that's another story). When you do go gluten-free, make sure you eliminate all sources of cross-contamination. I have a post about how to do that here:

https://www.celiac.com/gluten-free/blog/859/entry-1552-going-100-gluten-free/

  • 2 weeks later...
Neshema1 Newbie
Neshema1
Posted

I have both.

eatmeat4good Enthusiast
eatmeat4good
Posted

If you are tired of the Dr.'s just stay gluten free.

I had the symptoms of gastoparesis, but no diagnosis, and had fibromyalgia symptoms and a lot of migraine headaches. I'm 9 months into gluten free and I can tell you it has all gone away. Anyway, as far as what you should be seeing now, well you haven't been on it very long, and it will take time. You will have to be vigilant to get rid of all trace gluten to be able to allow the intestines to start healing. I am 9 months into it and only now am I able to really digest food normally. By the second month I had enough improvement to know I was on the right course. By month 3 and 4 I had severe stomach rumbling and gurgling all the time. As if baby villi were growing. Or at least that was how I envisioned it. It wasn't like a glutening, it was like stuff was healing and growing inside me. I stayed the course and really, all my symptoms are gone. I had them for 7 years. It is amazing to recover from something you think you will have your whole life. You should give it a good strict 6 months if you decide to stay gluten free. If you decide to go back to eating gluten to get tested be prepared that it could be negative and you could still have gluten intolerance or Celiac. The tests are not that good. Something like 30% false negatives. So then if you test negative you should still do the gluten free diet for at least 6 months to be able to tell if it will help you. It is difficult but very well worth it. Good luck.

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