Should I Be Tested?

[JenHarris]

I have a long history of intestinal problems and have been diagnosed with IBS, but I've always wondered if it was something more.

I frequently have bloating, stomach upset, and diarrhea. I'm lactose intolerant and severely vitamin D deficient. I have degenerative disc disease and asthma and consistently get sick with everything under the sun including severe frequent sinus infections/bronchitis pneumonia, and frequent stomach 'bugs'. I've been tested for Cystic fibrosis (my son has the disease) and so far everything is negative.

Does/Can any or all of this fall under the Celiac disease umbrella? I'm just looking for answers after years and years of repeated illness and seemingly no answers. I've been tested for immune disorders, but I seriously doubt I've been checked for celiac's. According to every test ever run, I have an extremely strong immune system, but it's never added up as to why I get sick so often. I'm tired, have muscle pain, and go through days I really don't feel like doing anything because my energy level is so low...and that's on the days I'm not sick with something. The one thing that doesn't fit with Celiac's is that I don't have any issues with weight loss. (I've lost 30 lbs recently through diet and exercise, but it's been a struggle all my life to lose weight. Currently I'm at the lowest weight in 6 years and about 35 lbs away from my ideal weight.

Any advice would be appreciated. I'm desperate.

[Dixiebell]

Welcome to the forum JenHarris.

I think you should get tested for celiac. All of your symptoms do fall under the celiac umbrella.

It would be a good idea to have you son tested as well. Cystic Fibrosis is on this list: Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA and IgG

Total IgA level

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG (This is a newer test that seems to be good.)

[cassP]

yes it all fits- all your symptoms are suspicious.. even having a family member with a different autoimmne disease .. many families have a few different AI diseases floating around..

and i never lost weight with celiac either. many of us were overweight and constipated.

good luck with your testing and make sure you're eating enough of a gluten challenge before testing, so that it's accurate. 4-6 slices a day 4-6 weeks or longer. i only did 2 weeks, and my tests were pretty weak

[JenHarris]

yes it all fits- all your symptoms are suspicious.. even having a family member with a different autoimmne disease .. many families have a few different AI diseases floating around..

and i never lost weight with celiac either. many of us were overweight and constipated.

good luck with your testing and make sure you're eating enough of a gluten challenge before testing, so that it's accurate. 4-6 slices a day 4-6 weeks or longer. i only did 2 weeks, and my tests were pretty weak

OMG... I will be MISERABLE if I eat that much bread! I bloat severely for a couple of days with just 2 pieces of bread. Seriously? They recommend that much bread before the test???

[cassP]

OMG... I will be MISERABLE if I eat that much bread! I bloat severely for a couple of days with just 2 pieces of bread. Seriously? They recommend that much bread before the test???

they do, and i dont know what advice to give u- cause really who wants to do that challenge-

my gi thought that 2 weeks was enough- but im telling you what- i could NOT have handled more than 2 weeks- my bloating was bearable... but my anxiety was thru the roof- i was a walking panic attack- i was done, could not do it any longer.

it's up to you how much you want or need that official dx. after 2 weeks- as you can see- my results were pretty weak... you could always use Enterolab- but it can get pricey- and your doctor will not recognize or diagnose you off of that.

good luck & sorry.. gluten sucks a$$

[GFinDC]

Sounds like celiac symptoms to me too. There are lots more symptoms that "CAN" be present also, but celiac is not a one size fits all as far as symptoms go. Some people have none, zero, nada, goose egg symptoms, but they still have celiac and still are being damaged. Look up silent celiac for info.

You can get the blood antibody testing done first. The next test is usually a biopsy of the small intestine to check for villi damage. Lots of people stop at the blood antibody tests though, as they are pretty reliable when positive.

A recovery when going gluten free is also a good test. Basically, if your body gets sick eating gluten then you shouldn't eat it. It means there is something wrong, either celiac or non-celiac gluten intolerance NCGI.

[JenHarris]

Thanks for the advice. I have an appointment at the end of the month with a local GI specialist who is known for dealing with celiac. I'm limiting myself to 2 slices of bread a day. For the most part I am miserable, alternating between constipation/diarrhea and horrible bloating, sometimes stomach cramps, and frequent headaches. I hope to God this means answers, and if nothing else even if I can't be diagnosed with Celiac, I will definitely be going gluten free from post testing on out. I hadn't realized how different/better I felt when I wasn't eating gluten.

[nuttmegs17]

I recommend getting tested. If know that if I went gluten-free and felt better, that SHOULD be enough of a diagnosis, but I'm afraid of going gluten-free feeling MOSTLY better but still having something wrong....at that point going back on gluten would be a huge ordeal. Better now than never.

I would rather just get the diagnosis one way or another so I get closer to getting relief.

[Jestgar]

, but I'm afraid of going gluten-free feeling MOSTLY better but still having something wrong....

then....why wouldn't you look for additional issues instead of assuming that gluten-free will fix everything? If the tests are positive, you stop eating gluten, and only get MOSTLY better, wouldn't you go back to the doc for more testing? How does having a celiac disease diagnosis change that?