Advice Needed - How To Procede

[sweetest]

I have recently begun to suspect that I am gluten intolerant. I have had a sensitive stomach for most of my life which has become much more problematic in the last year or so, I haven't had a normal bowel movement in at least a year (soft unformed stools are the norm), I am tired and achy most of the time (muscle pain as well as joint/bone pain) - especially in the morning. I have also had two 1.5 year bouts with chronic hives, relieved only with long term steroid treatment (both time I was ultimately told it was an autoimmune disorder, not an allergy)

After feeling crappy for so long I finally went to see my Dr. two weeks ago to get some blood tests. Within two days she called and told me I have severe anemia and hashimoto's disease (now on iron supps and hormone replacement) and referred me to an Endo and a GI. This week, the tests she took for the gluten intolerance came back negative...but I'm pretty sure she asked for the wrong tests, this is what was taken and the results:

Gliadin IGA - 0

Gliadin IGG - 0

I was confident that she knew what she was doing because when I told her I suspected I might be gluten intolerant she was very much in agreement and said she was going to test me for it...I guess I should have been more proactive! At my first visit, she told me to stop eating gluten, which I did for 10 days (before the results) and I did notice improvememt (which was even more dramatic after cutting out dairy) I am happy that she was able to figure out that my iron and thyroid are off (I have had my thyroid checked at my last two annual exams and was always told it was fine, she reviewed my previous tests and said it should have been caught after the first test!) but I have started to suspect that I know more about gluten intolerance/celiac disease than she does! She told me at my last visit that Celiac is a "severe gluten allergy"...hmmm, and she doesn't seem to acknowledge that the anemia could be connected (or that the thyroid could be suggestive).

After I got the negative results, I had bread with every meal for three meals and during the next two days I had some definite stomach discomfort, diareha, achiness, and pronounced fatigue. My husband is convinced gluten is the problem...I am still feeling a little doubtful.

I am seeing a GI in two weeks and I'm thinking about going back on gluten...everything I have read says I need to be on gluten to get positive results, ugh!

So my questions:

1. Can the gluten tests I took tell me anything...or are they completely useless?

2. Will ten days off gluten be enough to skew my results...I will have two weeks back on by the time I see the GI.

I am so frustrated and confused...I was really hoping the blood tests would tell me something and that I was on the right path. Although I am pretty sure that gluten is a problem, I also feel like I need to pursue a diagnosis...I have two children and I would like to know if they are at risk. I'm also concerned that the GI I am seeing may not be knowledgable and I have no idea how to find a Dr that is knowledgable. Are most GI's pretty well versed on Celiac/gluten intolerance (do I hear laughter...)?

Any advice/insight would be greatly appreciated

Jennifer

[LDJofDenver]

Here is a link to the University of Chicago Celiac Center, it explains the different tests, which are more accurate, ones they don't use anymore, why, etc.

Sometimes Doctors "listen to" info from Medical sources, when they won't necessarily just listen to you.

Maybe you can print it out and send it to your Doc.

Open Original Shared Link

Hope this helps you get answers and on the path to healing.

[nora-n]

Hi, the newest test is the tissue transglutaminase test, and many places in Europe this is the only test done (of course together with the total IgA, in case you have selectve IgA deficiency. In that case they run the ttg IgG test.

But, there are always some celiacs who have negative blood tests even in the presence of total cillous atrophy.

But, if you are in the early stages of celiac, they will noe even find anything in the gut, but you are still sick, and have started anemia, and thyroid antibodies.

The thing with celiac diagnosis is that here in Europe in many countires, diagnosed celiacs get money from the health authorities every months in case of an official diagnosis. Tthat is why they need to be very strict with the tests, and the blood tests have avery high cutoff. All these criteriae and high cutoffs are then used internationally, like tthe U.S.

Your antigliadin test might have been slightly positive, but it was below the detection limit.

And, the antibody thing happens in the intestines It takes a lot of damage for the antibodies to spill over into the blood, where gut antibodies do not belong at all.

Or, you could have IBS, which is by the way often triggered by gluten (I have read many abstracts that different bowel illnesses just go into remission when the rresearch subjects are put on a gluten-free diet...)

I do not have an answer, just an explanation to why your tests could have been negative.

My tests were negative too in spite of having had the thyroid thing and ferritin had gone down and itchy bumps for years.

nora

[sweetest]

Thanks for helping me figure out which tests I should have had...

So it looks like the tests I had were pretty much useless...I thought maybe the fact that they were 0 would be a good indicator that I don't have celiac. I guess I need to specifically ask for Total IgA and TTg IgA. I did decide to start back on a gluten diet at least until I see the GI on the 11th.

So now I'm wondering how long I should wait to get tested again...I was gluten-free for about 12 days...I've been back on for about 2 (and I did a one day trial in the middle of the 12 days). I'm thinking I should just stay on guten until I see the GI and talk to him about the tests...even then I'm afraid the 12 days gluten-free will skew the results, ugh.

I have noticed a return of some of my symptoms when I am on gluten, but nothing dramatic or violent, which of course makes me doubt the connection...I am able to manage pretty well on the gluten so I feel like I should just power through for a couple of weeks until I see the GI, I just worry about doing more damage...my dr. was really worried about my iron levels (ferritin <1) and seemed surprised that I was functioning as well as I am, hmmm. I just worry I am doing more damage by staying on the gluten, but i also feel like I need to do my best to find out what is going on...