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Desperate Newbie Post

akcandle

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akcandle Newbie
akcandle
Posted

I am going to apologize 1st hand if I am asking a question that has been asked numerous times. My excuse is I have a easily bored 7 month old therefore little time for research.

My Gastro thought I had Celiac Disease. My Grandfather does. My mother has been diagnosed with IBS over and over and has never completed a Celiac Blood Panel or upper endo.

I have always had an iron tummy. I love food, good tasty spicy, garlicy you name it and it has never bothered me. After the birth of my third child (7 months ago ;) ) I started having horrible diarrhea every day. It has never gone away, period. Like a lot of you I can no longer cope with it etc. Disrupts my life, endangers my children when I have to find a toilet NOW in public places etc. I seem to meet all the criteria of "symptoms" including a the hereditary factor, even down the the type of stool celiacs pass (okay now THAT was embarassing to add). Oh yeah, I recently had a colonoscopy that was negative for crohns, colities etc. No anemia, no bleeding.

Doc ran ONE test Tgaa is what I think he called it. He didn't run the full panel. He went ahead and scheduled an Upper Endo for the 29th. My lab finally came back today (I live in ALaska and it they had to send it down to the lower 48). The nurse said it was "negative" and they cancelled my upper endo because they "just didn't know what was wrong with me". Then acted kind of put out when I got upset. The nurse actually asked WHY I wanted another appt! :angry::blink:

In a nutshell my question is...how can one test out of the whole panel conclude I do not have Celiac D. when the doc was so sure I did. And why on earth would he cancel my Upper Endo?? Would a full Celiac Panel matter? Would the Upper Endo matter? Should I just try going gluten-free and see if I get better? Anyone with similar doc/testing experience?

Im just at a loss and depressed and now I am crying. I am at the point where I don't really CARE what the diagnosis is, just as long as I can have a plan to get myself feeling better. Can someone please help me? I need info to arm myself with so I can call the doc office back.

Thank you

Carla

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tarnalberry Community Regular
tarnalberry
Posted

The doctor is SERVING you - he is a provider of a service. By all means, call him back, and get the full panel! Some studies have recently shown that, in labs (particularly ones that aren't as good at reading the tests) the tTg test is not nearly as accurate as it was thought to be from clinical trials. (Also, I presume you're still eating enough gluten that a test would show positive... if not, that may be a reason for a negative... If it was a negative - you might try finding out what the number was.)

darlindeb25 Collaborator
darlindeb25
Posted
:( dont give up akcandle--dont ever give up-- ;) if anything we celiacs have learned, its we cant give up--this disease is still very new to the doctors :( --it's been around for years and years, but is just finally being diagnosed as it should be---i truly think that these forums are finding more celiacs then doctors do ;) --we are the reason that so many go to the doctor and request the tests--if the doctor wont consider the testing, then you find a new doctor ;)--let us know what happens--deb
Carriefaith Enthusiast
Carriefaith
Posted

I found a website with a list of tests for celiac disease and dh:

Open Original Shared Link

I have a few suggesstions for you...

-You could ask your doctor to run the other blood tests for celiac disease

-Try and get the endoscopy appoinmtent back (since the biopsies taken during the endoscopy would show villi damage if it is there).

(If your doctor/nurse refuses I'd look around for a new doctor)

-A lot of people get tested for gluten sensitivity through enterolab and I think you can also see if you carry the gene for celiac disease

Open Original Shared Link

Good Luck!

akcandle Newbie
akcandle
Posted
  • Author

Thank you very very much for your input I really appreciate it.

What is the Ttga in the whole celiac disease panel. What does it look for, just the anitbody? I have been trying to find the answers on the net, what each test in the panel is searching for and not having much luck.

I am going back to my gastro tomorrow afternoon. If he still poo poo's (YES the PUN was intended) my thoughts and feelings on the Upper Endo and further testing, Ill start a gluten-free diet on my own and try and work a bunch of over time to pay for the Endolab's tests. Should I just do the gluten panel for now of 99 dollars or do the whole shebang at 350. Which did you all do?

akcandle Newbie
akcandle
Posted
  • Author

Okay what the doc called a Tgaa, (I just got the lab report faxed to me) is really the IgA and the IgG. According to the lab results normal limits is considered less than 20. However, if all my symptoms fall in line with most of you here and the other various web sites, including a "trigger" and Im in my middle 30's.....would you all still be convinced it's Celiac or Severe GI even though those two blood tests were negative.

I guess I am trying to figure out if I am grasping celiac disease for just an answer, or If it really sounds like I have it even with the negative blood tests. Here are my actual symtpoms:

Chronic diarrhea for 7 months, accompanied by gas gas gas, bloating, severe cramping. No weight loss other than the 30 pounds from pregnancy. However, I still nurse my son and eat like a horse and I am "maintaining my weight" even though I nurse all night and pump all day and eat everything.

Possible Pregnancy/Labor/delivery trigger immediately prior to onset of symptoms.

Depression/fatigue/Itchy rashes here and there. Forgetfullness. Always so dang tired no matter how much sleep I have. Nausea at leat a few times a day. Some body aches (however that could be from working full time and chasing 4 children constantly :D )

All stool tests for parasites etc negative. Labs have been done three times the last 7 months looking for anything. Colonoscopy negative for Colities, microscopic colities and Crohns. All blood pathology for white blood cell count etc all within normal limits.

Immodium twice a day does not help me a bit,

This to me spells out Celiac. What would you think with the Negative IgA, btw the number was 5.5 and a negative IgG which was 9.5.

Honestly what would you all think?

THANK YOU!!

CARLA

Carriefaith Enthusiast
Carriefaith
Posted

I personally did not do the enterolab testing but I think that the Gluten Sensitivity Stool and Gene Panel Complete would be the best one to get. With this test you will be able to see if you actually have the gene for celiac (It is expensive though).

Also, I found this on the blood tests:

Open Original Shared Link

There is a description of the tests in the middle of the page.

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BamBam Community Regular
BamBam
Posted

I've lived for twelve years of exactly what your symptoms are. I have had no tests done, I went gluten free on my own. I also take Zelnorm, because my gi tract is pretty touchy. The gluten free diet has helped a lot. What do you have to lose, it doesn't cost anything medically to go gluten free. Try it for a week or two and see what happens. I will admit it can be a very emotional and frustrating job to start with, but basically you need to cook almost everything from scratch. I shop the outer aisles of my grocery store, fresh fruit, fresh veggies, meat, dairy and eggs. There are several of us out there that have never had "official test results." We know our bodies and we know what is good for it, and wheat/gluten just isn't one of them.

BamBam

Carriefaith Enthusiast
Carriefaith
Posted

Sorry I just got your second post now (after I sent the last one)

Your symptoms sound a lot like celiac. I would definately try and get your doctor to do more testing. I had the Tissue transglutamase antibody tTGAB blood test, which is very specific and sensitive to celiac disease. This was the only blood test that I had done foe celiac and after I got positive results I was diagnosed through a biopsy.

Here is a website on the Tissue transglutamase antibody tTGAB blood test

Open Original Shared Link

tarnalberry Community Regular
tarnalberry
Posted

With those results, I'd think that I'd need to be careful to focus too much on celiac, but would probably try the diet and see how it went. This is not "doctor approved advice" and some people would disagree with it, but I'm stubborn that way. :-) The tests DO give false negatives (though not at an unusable rate), and if your doc isn't going to suggest anything else, then trying the diet may help. You may have _other_ food intolerances in addition to or instead of gluten intolerance that you may want to try to track down as well.

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