Blood Test Negative, Now What?

[Greengal]

Hello,

I had the blood tests done for Celiac and my doc told me that it was negative, although he didn't give me the specific results (levels etc) as he didn't have them.

My question is, is it possible to have a completely negative blood result and still have Celiac?

I've been going through the ringer since January being sick with tummy trouble. My main problems are diarrhea, abdominal pain and cramping, and excess gas. I also have bad swelling in my calves and ankles and have lost about 40lbs in the last four months (without trying). I'm starting to get very frustrated because no one has been able to figure out what it is.

I've had a colonoscopy which didn't show anything, the celiac test, an upper GI (showed GERD and I'm being treated for that) and a laparoscopy (showed endometriosis). The doctor's think it's just IBS, but I am doubtful because my symptoms are so severe (I miss work usually at least once per week and constantly feel sick). Also, I've completely revamped my diet according to recommendations for IBS, tried a food diary, made huge lifestyle changes and tried a slew of medications, and nothing has made even the slightest difference.

The only other thing I can think of is that it may be gallbladder related, because I had an ultrasound that showed gallbladder abnormalities but I haven't been able to find a doctor to look at the results yet.

Any advice would be greatly appreciated, I don't want to feel like this anymore!

Kelly

[Alexolua]

Only thing I can think of telling you is to look into Enterolab, and if you can afford it, maybe get some testing by them.. supposed to be more accurate, when looking into Celiac, I've heard.

My blood testing was inconclusive.. think it might be possible to have negative blood though, maybe.

Enterolab.com is the website.

Hopefully someone else can be more helpful to the question. =)

[Guest jhmom]

Hi Kelly, welcome to the boards

To answer your question, YES it is possible to have a negative blood test OR biopsy and still have Celiac, it happened to me as well as so many others here on the board.

I had some of the same symptoms you listed including the weight loss; I lost 40lbs too, but in 2 month. I also went through a lot of the same test as you, all to come back normal, the only test that came back with questionable results (in my opinion)was the endoscopy; it showed "patchy inflammation" but not enough for the doctor to accept Celiac as my diagnosis. My doctor insisted I had IBS but I knew better, none of the symptoms matched IBS and I refused to accept it as my dx.

Your story sounds just like mine even down to missing work because of being sick. I was nausea 24/7, it was not a nice way to live each and every day so I finally had enough and decided to get tested through Open Original Shared Link . It took about 2 weeks for me to receive my POSITIVE results, I immediately went gluten-free and could tell a difference in the way I felt within just 3 days, the abdominal pain I had suffered with for over a year was GONE!!!!

Since you have had all the tests done through the doc I would suggest Enterolab or trying the gluten-free diet for a couple of months to see if you see an improvement.

I do hope you find out what is wrong so that you can find some relief!!!

[Greengal]

Thanks everyone for the suggestions.

I looked at Enterolab's website but I couldn't tell if they do testing for people outside of the United States? Does anyone know? I'm in Canada.

Thanks,

Kelly

[gf4life]

Yes, they do test people in Canada. It probably costs a bit more though...

God bless,

Mariann

[christyg90]

Hi,

I am new to this forum. I have been suffering with many symptoms for the last 5 years and no doctor has ever been able to find what is wrong with me. I have visited my gastroenterologist a couple years back and had an upper GI done and it just showed inflammation and said I had possible reoccuring ulcer disease. Then about a month ago I had really bad stomach cramps and decided to pay a visit to my doctor. she wanted me to have a upper GI done the following day, the upper GI just showed inflammation again. Then she ordered a blood test for celiac disease and that came back negative. Then she ordered another blood test and that one also came back negative. She then wanted to have an ultrasound done to see if I had gall stones. The ultrasound came back normal. Then I had another test done to see if my gallbladder was emptying properly. That test came back normal also. So at this point I am very frustrated.

I have been doing some reasarch on celiac disease and it sound exactly what I have. My symptoms include: abdominal cramps, bloating, gas, lacotse intelorant, fatigue, depression and mood swings. I am going to check into getting the Enterolab, hopefully it will show something.

[burdee]

WHOOAA!!! Your symptoms sound SOOO much like mine. I can relate to the 'runaround' with doctors while YOU still suffer those painful symptoms. I was misdiagnosed 7 years ago with 'IBS' when I was finally brave enough to describe my symptoms to a doctor. Following the 'IBS' diet (consuming more 'whole grains', i.e. whole WHEAT) just exacerbated my pain from tolerable to excruciating.

When I recently read an newspaper article describing MY symptoms (which included constipation, rather than the 'classic celic symtom' diarrhea) as celiac, I called a neighbor whose husband had been diagnosed with celiac disease 6 years ago. She told me I could endure more painful symptoms while I waited for doctors to test for celiac or I go gluten-free ASAP and see how I felt. After I experienced immediate pain relief (from excruciating to tolerable) by aviding gluten, I decided to just follow the gluten free diet. A few days later I saw a naturopath hoping to get 'tested'. To my amazement (and disappointment) he discounted both the blood tests and intestinal biopsies traditionally used by most doctors and told me to just keep avoiding gluten, because that's the only treatment doctors would recommend even if the tests showed positive celiac results. Meanwhile I learned that most doctors would ask me to 'gluten load' (return to eating gluten for a few weeks) before the test, since I had been avoiding gluten. I decided I wouldn't endure more pain, just for a doctor to give me permission to follow the diet that was already helping me.

When I learned that Enterolabs tests didn't require 'gluten loading' and were sensitive enough to detect antibodies, malabsorption, etc. even months after going gluten free, I ordered their package, despite the cost and my suspicion that my HMO/insurance would NEVER reimburse me. When my test kit was delayed in the mail, both Dr. Fine AND an Enterolab Technician emailed to reassure me. My test kit arrived yesterday, I completed the test today and I just called Airborne Express to pick up my test 'specimums'. I've never done such an easy, noninvasive test nor corresponded with such caring 'lab' people before. I read on this board that I may wait 2 months for my results, but I believe that wait will be well worth it. I HIGHLY recommend that you check into Enterolab and contact them ASAP if you can afford any of their tests. They offer a variety of test options (at various prices) which their website clearly describes. Good Luck!

[kalo]

My doctor was the one who suggested this to me. He ordered a couple of blood tests (Iga and?) and told me that even if they were negative it didn't mean I didn't have it. Last week I went to my allergist whom I started with at the beginning of this year (3 hours a way). He knew about celiac disease and was able to order the entire blood panel (including Ttg) which he did at my request. After I had the blood drawn I realized that I had been gluten-free for 3 weeks already. The allergist called me today and told me that everything was negative, therefore, gluten free or not I DON'T HAVE IT. I'm not giving up till I get the results back from enterolab which I mailed off a couple of weeks ago (not sure exactly when). I keep reading that this test is more reliable and sensitive. Hugs, Carol B