Endoscopy Tomorrow

[saiamarie]

I just wanted to say hi to everyone. This is my first post. My gastroenterologist thinks that I have celiac disease and I have an endoscopy with a biopsy tomorrow. I've had so many tests in the past year that I'm burned out, but if this will let me know what's going on....

My symptoms are so varied that it's hard to believe that it could be all from one disease, but after reading around on this board it does seem possible.

Pain in abdomen after eating is so severe it makes me feel woozy

Severe cramps after eating

Excessive gas, bloated feeling

Almost constant diarrhea for the past four years

Migraines, neck pain

Extreme fatigue, sometimes can barely force myself to get out of bed

Tingling in my face and my left arm

I had gallstones and then had my gallbladder removed

I have had three serious kidney infections and been hospitalized for them

I have had kidney stones three times, once they had to put in a kidney stint

Had an abnormal sleep deprived EEG.

Thyroid testing came back normal. I'm not anemic.

Colonoscopy came back clear and that biopsy was fine.

Was recently diagnosed as epileptic, but when I went for a second opinion, the second neurologist said that was not likely. I'm so confused.

Other than this, I really am a healthy in decent shape 30 year old woman. I'm very active, have three children and an amazing husband. Sometimes I feel

frustrated and a little overwhelmed with these constant health issues, but I'm not depressed or anxious despite a few doctors saying that my symptoms

reflect depression or anxiety.

I don't know if I should hope that I do have celiac disease so that I at least know what's going on, or if I should hope I don't and just be left in the dark still...

[ravenwoodglass]

You sure do sound like you are one of us. If they have done a celiac panel do go gluten free when the biopsy is done, you don't need to wait on the results. There is up to a 20 to 30 percent chance of a false negative on testing so do give the diet a good strict try when your testing is finished. Hopefully you will be feeling better soon.

[saiamarie]

So, I was told I have gastric erosion and they just gave me Pepcid.

Could this cause all my symptoms??

[gailc]

So, I was told I have gastric erosion and they just gave me Pepcid.

Could this cause all my symptoms??

I doubt it. Oh, you already had the test, I was going to wish for you that you don't have Celiac, but if you do I wish the test would show it.

You can be 'just' gluten intolerant and it feels just as bad as being Celiac. Works for me.

gailc

[Kerryd]

Hi,

I've been reading this forum for a few days now and decided to join because I just found out I most likely have celiac's from a blood test and am scheduled for my endoscopy on Monday. I was pretty shocked by the results of the blood test, because I have had such on and off symptoms for the last few years. I basically just learned to live with constant diarrhea, excessive bloating and gas (which along w my stool was often embarrassingly stinky) nausea, cramping and (for a short period) occasional vomiting in the hours following eating, and frequent migraines I was experiencing, until a new beau noticed my migraines and pain/nausea after eating. I honestly was in denial of any real issue until I found out about the blood test results, but after reading a lot about other people's experiences I am starting to accept that I have a gluten issue.

My world has pretty much turned upside down and I'm feeling my mortality at age 22. I had NO IDEA that my stomach pains and migraines could be reflecting a much larger problem and I'm a little scared because I don't know how long I ignored the symptoms (my brother told me I'd been saying I felt ill after eating for years, but I tend to try to "tough things out" and ignored the issues). Does any one know if severity of symptoms reflects other damage to the body? I'm waiting on my bone density scan, and will find out more after my endoscopy I guess. I also am upset because my doctor specifically asked me to "not change my diet too much" before the endoscopy, because she wanted an accurate baseline for the damage to my small intestine. I have been eliminating gluten from my diet, but every now and then will intentionally have a small amount of a gluten containing food to satisfy this request by my doctor. The after affects suck, and I really feel uncomfortable about knowingly hurting my body. The endoscopy is only a few days away, but I don't know if I need to be putting myself through this! Does anyone know?

Also, I am learning a lot about how different foods that may appear to be gluten free still bother people, for instance, I read on another forum that others have had problems with milk. Is that because celiacs can cause lactose intolerance, or because milk can have hidden gluten? I am still learning a lot about how foods can become contaminated with gluten, and am wondering if going organic can help prevent this. I am thinking that organic meat and milk would be less likely to have been contaminated with gluten because the animals that provide the products are fed purely vegetable diets and the organic farmers are more sympathetic to gluten issues.

Sorry for the long post, I just am very new to all of this and am trying to become comfortable with my new life- last week I was able to eat anything I wanted, and this week I am afraid to eat or drink anything that doesn't say gluten free (even if it is a glass of milk).

Thanks

[pgrovetom]

So, I was told I have gastric erosion and they just gave me Pepcid.

Could this cause all my symptoms??

VERY DOUBTFUL

Take a look at this testing procedure - You need it -

Open Original Shared Link

Did they do a Celiac Biopsy while doing the endoscopy? Its a shame if they were in there and didn't!

Have you done the Comprehensive Celiac Panel

Labcorp version

Celiac Disease Comprehensive Antibody Profile

Synonyms:

Deamidated Gliadin

Endomysial IgA Antibodies

Tissue Transglutaminase

Total IgA

Test Number: 165126 CPT Code: 82784; 83516(x4); 86255

AND the

Celiac Disease HLA DQ Association

Synonyms:

Disease Association Testing

HLA DQ2

HLA DQ8

HLA Typing, DQ2, DQ8

Test Number: 167082 CPT Code: 83891; 83894(x2); 83896(x44); 83898(x2); 83912

[shadowicewolf]

So, I was told I have gastric erosion and they just gave me Pepcid.

Could this cause all my symptoms??

>< sounds like me. I had some damage in my throat and the biopsy was negative... and there is no way in heck my problems are just acid reflux/ibs...

So i went on the gluten free diet anyway, and i've felt somewhat better than before...