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Here Are My Reality....is It Really Celiac Disease?

kayemariefree

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kayemariefree Newbie
kayemariefree
Posted

So here is what I want to know....is it possible to have lived with Celiac Disease for a long time and not know that is what you have? I have suffered from symptoms of celiac most of my life, and yet it was never given the attention it required. Meaning if I my stomach hurt it was just written off as a stomach ache.....I blacked out because I was not eating enough salt/sugar, diarrhea just meant I was dehydrated. Anything to write off my symptoms by my family as something else. Which is ironic, because in the past month after going to the ER, I found out that my family has a history of gastro issues. And yet whenever I would complain of not feeling well, they would try to avoid it instead of seeing it for what it might possibly be. What’s more frustrating is now as an adult, and displaying more symptoms of the disease, people think I am faking it. I blacked out during my fitness class the other day, and people were telling me I was doing it to receive attention. The level of ignorance in people is astounding! And my boyfriend tries to help me but his advice is that I eat more....eat more of what? Everything makes me sick! What’s more is people think I am making up symptoms to gain attention....which makes me feel more isolated than ever. I should have a support group.....and yet here I am by myself trying to find answers to what is going on in my body.......

 

So here are my symptoms (and I understand that this is not a diagnosis of Celiac Disease, but maybe it might answer some of my questions.) 

 

-I have blood in my stool (dried black flecks) which I am 100% positive is not coming from what I am eating.

-I have horrible migraines 

-Having blackouts 

-Horrible bloating and sickness...especially after eating anything with gluten in it. 

-Feeling weak

-Diarrhea

-Strange sores along my scalp and in my ears that are not caused by any outside factors. 

-Along with sores on my tongue.....there is a large spot in back where it looks like my tastebuds have been rubbed off.

-Fluctuating mood along with some mild depression. 

 

 

-Kaye-

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cyclinglady Grand Master
cyclinglady
Posted

The only way to tell is to get tested. Ask for this celiac blood panel from your medical doctor:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Welcome to the forum and let us know how it goes!

Maddi Community Regular
Maddi
Posted

If you've gone gluten free and have noticed a difference when reintroducing gluten then you could have some sort of sensitivity / celiac. However, to know for sure you should get a Celiac panel. (Like cyclinglady has posted). If it's negative maybe you just have a sensitivity or maybe they can do a biopsy of your small intestine (endoscopy). If you do get one pleaseeeee make sure they take more than 4 samples (4-7). I am not diagnosed but I am going to try the diet since my symptoms have gotten better since getting off of gluten.

nvsmom Community Regular
nvsmom
Posted

I lived 38 years, perhaps as few as 33 years, with celiac disease before I finally figured it out and had a doctor confirm it.  I thought constipation was normal and when it did actually change to normal, I thought that was D.  I ALWAYS carried a sweater with me to hide my after eating or drinking bloat.  What do you mean it sn't normal to be doubled over after I eat?  My doctor told me it was normal for me.   :rolleyes:

 

Get tested. If it is negative it could be NCGS and then you can try the diet for 6 months or so.

 

Do discus your symptoms with your doctor. Bring in a list.  Take pictures of the sores on your skin and in your mouth, and even take pictures of your BMs.  Doctors don't always believe us so if you come in with proof and documentation (like a food and symptom journal) it is harder to brush us off.

 

Good luck!!

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