taynichaf

First of all, since the beggining of the year I have been eating light gluten, if any, do to "clean eating". These tests were done after only 6 days of eating A LOT of gluten.. and the week before I had a few glutenous days.

Immunoglobulin A (IgA), S           (results) 217    (unit) mg/dL   (ref. value) 60 - 337

Under these results is says:

 Negative serology. Celiac disease unlikely. However, approximately 10% of patients who are already adhering to a gluten-free diet may be seronegative. If celiac disease is highly clinically suspected, consider HLA-DQ typing.

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Tissue Transglutaminase Ab,   IgA,   S      <1.2            U/mL                      <4.0 (negative)

My other tests were

WBC COUNT - 10.9 (High)

MVP - 8.6 (Low)

FERRITIN SERUM - 19 (Low)

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If i am not celiac, i'm gluten intolerant.. But I just want to know for sure if i'm celiac. I like to know WHY I cant eat gluten. What should my next step be?? DNA test just too see if it can be ruled out?

Thanks. But I am holding out hope that this is "good news". If HIS office called me to schedule a follow-up, then I assume something came up in the biopsies. I hope it'll be some kind of answer.

I posted before I read your update:)

That's such a long wait though! Frustrating, but hopefully you get the results you want.

Very exciting! Although it shouldn't be..ha.but good luck!!

I'm sorryyy:( I know the feeling.. I'm new to this but of your still eating gluten, just get retested!

Hope you get accurate results <3

And I have been trying to get a copy of my test results, just to see, but the doctors office hasnt replied back :/

I have a long list of symptoms that go along with celiac disease, and I have had them for awhile, I just always thought they were normal. About 2 years ago is when things started to get worse. The begining of this year I joined a nutrition challenge, so I was pretty much cutting out bread and eating natural foods. I had a few slip ups and then i tried a low carb high fat diet.. Then i had a slip up after two weeks and had a huuuuge gluten binge.. The next couple days I would get random stomach pains and my fatigue just got worse as i continued to eat gluten.. So that lead me to search my symptoms and then I found celiac disease. After going to different doctors for about 2 years, I was extremely happy when my symptoms matched celiac disease.

I went to the doctor about a week ago and he tested me for it (NOT the full panel...makes me angry!) This was only a week into my gluten chalenge and I have been fairly "low gluten" for a few months before the test. THE TEST WAS NEGATIVE, but I had unexplained deficiencies. I was in sooo much pain just a week into the gluten challange that my doctor said im atleast gluten sensitive.

I just can't figure out what I should do! Either way, I will not eat gluten, and as of now i consider myself NCGI, but I just NEED to know for sure!

What should I do?? I was thinking about just going back to my doctor and demanding a DNA test for celiac, that way I can rule it out or not? And then probably trying the gluten challange again, for a longer time period and praying that the test would be accurate this time..

Thank you so much for reading<3 I've been posting like crazy on this website, but I feel like I have to be my own doctor and it's extremely frustrating! I want to figure this all out ASAP because I'm 18 years old and will be going to college in a few months and gluten is ruining my life!

Hmm alright, thanks.

I have many other symptoms too btw, I've looked at other possible causes and gluten intolerance seems to be the best match. it just sucks that they can't really test for NCGI.

She is getting tested by the same doctor that I did..he did not test the full celiac panel, plus I have been eating low gluten unintentionally.

How can I ensure my mom gets the right results??

I am still convinced I have the disease because I have unexplained anemia and other deficiencies.. Now my grandma got tested for it because she has the rashes, but she tested negative..and my family has a history of autoimmune diseases and depression.

I'm just afraid my mom won't accept that gluten causes problems for me if she tests negative. So, what are reliable tests??

Thank you!!

Thanks! I am not even getting an endoscopy anymore, so I'm just focusing on eliminating the gluten.I slowly start to cook different things. Thank you for the ideas

Makes sense!! Thank you for the explanation!

I have a loooong list of symptoms, so I'm not going to even list them. I just didn't want to be acting like a "wannabe"celiac, if that makes sense?I wanted to be sure that the doctor said I was one, before I tell anyone else..but I will just say I'm a celiac now! Sooo happy thaaaat I'll finally get better:)

Thank you all sooo much!

This is frustrating for me because I don't know what to believe! The doctor said it's at least gluten intolerance...but I still believe it's celiac.does gluten intolerance have to be just as strict as a celiacs diet? Because I feel like I'm more likely to not care all that much about cross contamination..

Oh, and I have been anemic for awhile..was taking double dose of iron supplements and they didn't help..still sound like gluten intolerance, or celiac?

I want to get a different kind of test done, but I don't know where to go??

****my mom told me or family has a history of autoimmune diseases.

No, it was not a full panel..I asked for one, but they could only test for two out of the full panel. I will call and get a copy of the test. Thank you all <3 but is there any different between the lifestyles of gluten intolerance and celiac? Since I tested negative for celiac I feel like I don't have to be sooo strict..but I'm not sure.

Oops! I swear I put this in a different category!

The doc said I atleast have gluten intolerance and either way can't eat gluten..but I have been eating fairly gluten free for awhile, unintentionally..aaand he only tested for two things, not the full panel, and I'm still anemic despite taking iron pills..

I think it was a false negative, but maybe not.. Is there anything else I can do to check? He would only schedule me an endoscopy of the test was positive..

Anyone else gluten intolerant?? Or does anyone else believe you're test was false?

Thank youuuuu

Thank you!

Go to a different doctor!!

Can I quit eating gluten after three blood tests, but before the endoscopy? My doctor said I could...but everything I've read says to not go gluten free until after tests...how long will the damage show up on the endoscopy after not eating gluten? I'm tired of feeling like crappp, plus I wanna be a little better by my birthday in a few days.

Thanks!!

How accurate is the prometheus celiac panel? It's the only celiac test I could get, but I know it doesn't test all of the things for celiac..but I am also getting tested for iron and b12 deficiencies..so hopefully this will help the results?

I'm just so scared that I will be one of the many people that test negative for celiacs, even if I do have it..so what would be the next step??

Another symptom I noticed is acid reflux..I always had it, but I was just so used to it I thoughtit was normal..after not eating gluten, and then reintroducing it,I felt it bad!

I have not been eating much gluten lately, which wasn't on purpose..but I noticed positive changes and am now hipping to get tested for it...I KNOW it's celiac..I'm so positive..but I need the proof or my parents won't believe me. I've been eating so much bread, getting ready for my doctors appointment...but I'm just so scared that my test will be negative..or that he won't even listen to me when I tell him what I think I have!!

What should I say to him, and what tests should I request?? This is very important to me..help!!

Sooo much to say...but after a year of trying to lose weight, I've come across celiac disease and the more I read about it, the more I thought I had it..

My symptoms now are depression, anxiety, irritability, bloating, tingling hands and feet, fatigue, muscle weakness, very gassy, frequent bowl moments and sometimes diarrhea..and very tired! Oh and I also have lost my period..

Does this sound like celiac to you?? Whenever I tried bringing it up to my mom she doesn't take it seriously, but I made a doctors appointment myself..

thus might be long, but if you keep reading I'll tell you about past celiac related issues.

The first one that I can remember was going to the doctor in about 4th grade because of reoccurring stomach pains.I got an x ray, and I think I was just really constipated or something, and then I was prescribed laxatives.. Now, in 6th grade I weighed about 75 pounds, and growing up I always thought I was fat, because my gut always seemed to sick out. By 8th grade I weighed around 115! And in 8th grade is when my anxiety seemed to get worse and I changed, and I wasn't the same person anymore..and after lunch,I would get terrible stomach pains! My stomach felt like it was popping,I would get support gassy, and my stomach made really loud noises (so embarrassing) somehow I came to the conclusion that I was lactose intolerant, and then I moved on. My depression and anxiety slowly got worse through the years and my bloating and gas seemed like a normal thing to me. By 11th grade, my depression worsened..this happened to be after my beer drinking phase!.. Then after awhile I quit drinking (and still don't) because it just makes me feel tired and I never feel "drunk". So, by the end of 11th grade I weighed almost 140! And I stopped having my periods too. Then I tried losing weight, eating very strict, over exercising, and eating very little.I lost weight but was still puffy, and it was sooo hard to keep losing, and I could gain very easily.. One time I ate 5 bread sticks (still within calorie goal) and I gained 5 pounds the next day.this want water weight, because I ate carbs daily. My breakfast every morning was whole wheat toast! Soon I became extremely fatigued, but I was determined to lose weight..so during summer I would sleep in, eat breakfast, workout for two hours, and then go home and go back to beddd.I had to sleep a lot! And my depression and anxiety slowly got even worse.then I quit restricting myself so much (but still ate really healthy) and I gained 15 pounds in two weeks...! So I gained all my weight back. The only tone I started losing again was when I didn't eat so much bread and oat meal (thus wasn't on purpose ) then I got into high fat dieting, which I mainly got carbs from veggies and fruits..then I got my period! And in two weeks,i like 8 pounds, aaand my bloating was gone just a little spotting though..then I was craving spaghetti so I aye a bunch of whole wheat pasta..the next week after that I would get random pains in my stomach..but I continued to eat wheat and got really tired and irritable again..oh and after I ate that pasta, the next morning I was 8 pounds heavier.. Now ik so exhausted all three tone that I can't even exercise..I'm sooo weak..my legs hurry and I get winded just by walking up stairs! When I run,I never get the endorphins anymore,I just feel even crappier when I'm done!

My dad knows that there has to be a reason for the ways I've changed..and I've accepted that it's just depression, but lately I don't think so...

My blood tests a few months ago..I showed low iron and low b12..normal thyroid..my doc put me on antidepressants that give you energy..and Heyyy..still no energy!

Sooo sorry about howww long this is! But if you read out, thank you!!! My doctors appointment is in a few days (I moved, so it's a brand new doctor) so how do I all to get tested for celiac?!

You sound exactly like me!...same situation! I am also paying that I am a celiac, because I know there has to be a reason for the person I've changed into..