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Very Frustrated

aeon077

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aeon077 Newbie
aeon077
Posted

A little bit of back history= I went in a couple months ago with ongoing severe stomach pains and chronic loose stools. The doctor put me on Nexium 60mg up to 2x/day, and ordered an endoscopy and colonoscopy. Endoscopy showed chronic gastritis, the Colonoscopy showed inflammation in my terminal ileum 'ileitis'. The specialist ordered allergy testing, which I'll talk about in a second. My regular doctor had ordered blood tests because a previous test had indicated anemia. There was a lab error with the first test, but the second test came back as being very anemic. My overall iron was 35 with a saturation rate of 12%.

I went in for a follow up appointment on Monday to discuss the allergy test results with the 'specialist'. I honestly am not sure what he specializes in, just that he's a surgeon, and does 'scopies'. We're on a little military base in the middle of Turkey, so there is limited resources... Anyway, he tells me that my allergy tests [run for gluten and dairy] came back negative as well as the fecal fat test. [broad spectrum [not a panel], one value, both were 0.35]. He then tells me that there is basically nothing else he can do for me and that I should refer all questions back to my regular doctor. I told him about the low iron, and tried to discuss it with him, but he just says, you'll probably have to take iron supplements and shoos me out the door. That will go great with my chronic gastritis, right?

So now I'm back with my regular doctor, who lets just say, isn't on top of things. I do have a follow up appointment on Monday with him, but that's about the iron. And I can almost guarantee you that he'll just put me on supplements. Not figure out WHY my body isn't absorbing iron, and hasn't been for decades. I am almost certain that it's a gluten intolerance. So i'm not sure where I should turn from here.

I did decide that I'm going to just start eating gluten-free, which I'd been holding off on for diagnostic purposes. Does that seem like the wisest thing to do if the doctors here just seem like they're not going to do anything else?

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MitziG Enthusiast
MitziG
Posted

It sounds like your options for getting a celiac-knowledgeable dr in Turkey are slim. Can you get a copy of the bloodwork that was done and post it here? Celiac isn't an allergy to gluten, so if they did "allergy" tests that is not something that would show celiac. Anyway,m if you posts the tests so know what has been done, we can give you better advice about what to do now.

roxieb73 Contributor
roxieb73
Posted

If you don't think you are getting anywhere with the docs a trial Gluten Free diet is in order. I would hate for you to wait months or longer to feel better if it can help just because the doctors are being dumb. ;)

aeon077 Newbie
aeon077
Posted
  • Author

Yes, I can get copies of my reports. I just have to wait until next week when I have the next follow up with my regular doctor. They won't release medical records before then. MitziG, I didn't realize that an allergy test wouldn't show that. So am I right in wanting to get a full gluten panel done? I am just beyond frustrated that they did a biopsy, and found inflammation, but didn't test it for celiac. Even though we discussed it. Is that not how intestinal lining would "appear" during a colonoscopy if you were sensitive to gluten, or some other food?

Roxieb73, you're totally right. He said to me "If you're still having the same symptoms, we can repeat the colon/endoscopy in 6 months. Gee...thanks! lol

Salax Contributor
Salax
Posted

Yes, I can get copies of my reports. I just have to wait until next week when I have the next follow up with my regular doctor. They won't release medical records before then. MitziG, I didn't realize that an allergy test wouldn't show that. So am I right in wanting to get a full gluten panel done? I am just beyond frustrated that they did a biopsy, and found inflammation, but didn't test it for celiac. Even though we discussed it. Is that not how intestinal lining would "appear" during a colonoscopy if you were sensitive to gluten, or some other food?

Roxieb73, you're totally right. He said to me "If you're still having the same symptoms, we can repeat the colon/endoscopy in 6 months. Gee...thanks! lol

Celiac effects the small intestine not the large, so a colonsscopy only looks at the large intestine, can't see celiac there. The endoscopy would have looked at the small intestine and would have had to biopsy a piece (or several) for celiac confirmation. Of course some docs can see damage there as well without the biopsy, but that is the golden rule for celiac diagnosis. However, personally I feel that if you have anti-bodies it should confirm celiac..just because they (they antibodies) haven't actually blunted the villi doesn't mean at some point they won't start...since they aren't supposed to be there anyways...sorry tangent...getting off my soap box.

Anyways..I think if it's possible to stay on gluten and get into your doctor asap and demand a celiac blood panel, then go off gluten. At least this is what I would do if you can before going gluten-free. But it's your call and you don't need a doctors permission or diagnosis to go gluten-free. So do what you feel.

Also I noticed you mentioned terminal ileum 'ileitis' generally speaking that usually is a relation there to Crohn's disease, Open Original Shared Link you might want to research that more as well. But I do think a gluten free and casein free diet would help you.

Best of luck!

nora-n Rookie
nora-n
Posted

yes you should continue eating gluten till they take an actual celiac blood test, not allergy tests.

I guess they looked at the stomach and found inflammation, and did not take a biopsy of the bulb of the duodenum, or, better, at least 4 biopsies. They better go online and check out celiac disease.

aeon077 Newbie
aeon077
Posted
  • Author

Celiac effects the small intestine not the large, so a colonsscopy only looks at the large intestine, can't see celiac there. The endoscopy would have looked at the small intestine and would have had to biopsy a piece (or several) for celiac confirmation. Of course some docs can see damage there as well without the biopsy, but that is the golden rule for celiac diagnosis. However, personally I feel that if you have anti-bodies it should confirm celiac..just because they (they antibodies) haven't actually blunted the villi doesn't mean at some point they won't start...since they aren't supposed to be there anyways...sorry tangent...getting off my soap box.

Anyways..I think if it's possible to stay on gluten and get into your doctor asap and demand a celiac blood panel, then go off gluten. At least this is what I would do if you can before going gluten-free. But it's your call and you don't need a doctors permission or diagnosis to go gluten-free. So do what you feel.

Also I noticed you mentioned terminal ileum 'ileitis' generally speaking that usually is a relation there to Crohn's disease, Open Original Shared Link you might want to research that more as well. But I do think a gluten free and casein free diet would help you.

Best of luck!

Learning new things every day! That's nice that he did a biopsy at the wrong end. lol Sounds about right for this place. I know they did biopsies during the endoscopy, but I know they didn't test for celiac with those. He did mention that the colonoscopy biopsies were clear of any cancer, colitis or crohn's, which I guess is good.

Thanks for the info. I appreciate it. I will do that at my next appointment. After then, I go rogue! lol

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kareng Grand Master
kareng
Posted

Learning new things every day! That's nice that he did a biopsy at the wrong end. lol Sounds about right for this place. I know they did biopsies during the endoscopy, but I know they didn't test for celiac with those. He did mention that the colonoscopy biopsies were clear of any cancer, colitis or crohn's, which I guess is good.

Thanks for the info. I appreciate it. I will do that at my next appointment. After then, I go rogue! lol

Get a copy of the pathology reports for the biopsies. If they took them in more than one locations you may have 2 or more. Sometimes they can squish it all in one report. I'm thinking they may have only have biopisied the colon. If they did biposies in the small intestine, the pathologist looks at them and see's whatever he seees. He doesn't test them for Celiac he sees the damage.

aeon077 Newbie
aeon077
Posted
  • Author

yes you should continue eating gluten till they take an actual celiac blood test, not allergy tests.

I guess they looked at the stomach and found inflammation, and did not take a biopsy of the bulb of the duodenum, or, better, at least 4 biopsies. They better go online and check out celiac disease.

haha yes, they should! Apparently they skipped this subject in med school? *sigh*

nora-n Rookie
nora-n
Posted

recent research has shown that in allt he countries around the mediterranean, they have just as much celiac as here in Europe or the U.S.

And in northern Africa they even have found even more celiac, like 7% or so when testing everyone in a refugee camp....so celiac experts are very concerned about what refugees are given when the west sends supplies, it is wheat, wheat and wheat....Teff, which has been grown in northern Africa before, is totally gluten free. Injera, the flat fried bread, is traditionally made from teff.

frieze Community Regular
frieze
Posted

if you are active duty military, a dx of celiac may well get you mustered out on a medical discharge. If they actuaully took biopsies of your small intestine, and didn't throw them out already, they can be reread by someone else.

squirmingitch Veteran
squirmingitch
Posted

And to make sure you get the FULL celiac panel; here it is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

If they don't do that then they are just wasting your time.

aeon077 Newbie
aeon077
Posted
  • Author

if you are active duty military, a dx of celiac may well get you mustered out on a medical discharge. If they actuaully took biopsies of your small intestine, and didn't throw them out aleady, they can be reread by someone else.

I'm a military spouse. My husband is active duty. My husband thinks he might have it too, so I'll have to tell him about that. (he always acquires whatever illness I have. I'm surprised he didn't pop out a child...lol) I will ask about the biopsies. I have a feeling they're long gone though. Thanks. :)

aeon077 Newbie
aeon077
Posted
  • Author

And to make sure you get the FULL celiac panel; here it is:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

If they don't do that then they are just wasting your time.

I was actually going to come back here and ask for this. So THANK YOU!! That was a big help listing that info. :)

squirmingitch Veteran
squirmingitch
Posted

My pleasure.smile.gif

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