Should I Try Again?

[amymm]

Hello everyone. I will try and give a brief background. I am a 36 yo woman with three kids. I have had autoimmune thrombocytopenia (low platelet count) for the last 17 years. I also suffer from hypothyroidism. After the birth of my 2nd child in 2000, I started having lots of weird symptoms. I ended up in the ER 3 different times with severe stomach pains. No cause could be found.

I also had joint pain, pins and needles feelings, brain fog, anxiety, sleep problems, severe pains in my legs, etc. I really had too many symptoms to list. This is also when I was diagnosed with the thyroid problem.

I read about celiac and it's link to other autoimmune diseases. I was convinced this must be my problem! I asked to be tested and I found a GI doctor. He pretty much dismissed me, but to humor me, did the blood tests. They all came back normal. I realized later though that he didn't do the IgA deficiency test. I read that IgA deficiency is very common with thrombocytopenia!

I later found another doctor to do the endoscopy. The found mild something or other of the lamina propia. There was no mention of the villi. They told me I had IBS and gave me drugs I never took. I cried in their office and of course they dismissed me as a nervous, depressed female.

So fast forward to now. I took my youngest (16 months) to the pediatric GI for a problem and when he asked for a family history, he got really interested in me. He was upset to hear no one ever ordered an IgA deficiency test. He wants me to pursue further.

Here's my problem-I'm so done with doctors. I'm still suffering from so many of the same symptoms. I guess I've just learned to live with them. I hate to go through all this again to be told I'm depressed, or crazy or have IBS. Should I pursue this again? It's so hard to follow a diet when you haven't been given the diagnosis-most people just don't support your efforts. Any advice? Thanks!

[aikiducky]

Here's my problem-I'm so done with doctors. I'm still suffering from so many of the same symptoms. I guess I've just learned to live with them. I hate to go through all this again to be told I'm depressed, or crazy or have IBS. Should I pursue this again? It's so hard to follow a diet when you haven't been given the diagnosis-most people just don't support your efforts. Any advice? Thanks!

For what it's worth, I think you should pursue testing. It sounds like this doctor might be more knowledgeable? Also, if you indeed have celiac and you have been eating gluten all this time, it might be that the damage to your intestine has now progressed to the point that it's detectable. And the IGA deficiency thing is definitely worth checking out.

What you could do is start reading this board, and celiac.com, and find out more about celiac and the testing, so that you can keep an eye on the doctors to perform all the necessary tests. if you can, try to find a doc who specialises in celiac.

And last but not least, after all the testing is done, do try the diet to see if there is any improvement. It's not so hard to stick to a diet if it makes you feel better!

Pauliina

[Guest nini]

there are many people that go on this diet by choice simply because it makes them feel better.

If it will make you feel better to pursue further testing, do so, but keep in mind that the testing can only rule it in, not rule it out.

In my personal opinion, the best indicator is how your body responds to the gluten-free diet. You may or may not have Celiac, but you very easily could be gluten intolerant which cannot be determined by any testing, but only by dietary response. You do not need a Dr.s permission to be on the gluten-free diet and if you choose to do it and it makes you feel better, it is much easier to stick to if you see results. And give yourself a good 3 to 6 months on the diet before you make a judgement about if it's helping or not. You may not be 100% by that time, but you may notice a significant improvement in symptoms if you are gluten intolerant.

The only cure for Celiac is the gluten free diet anyway, AND if it's something else besides Celiac, the diet will not affect testing for other things.

[Nancym]

If you don't want to mess with the doctors only to be told your negative again, you might want to check into enterolab.com. He gets results of gluten sensitivity (casein and others too) much ealier than blood tests do.

I decided to go gluten free based upon a 2 week trial that made me feel like a different woman. But then afterwards I decided to get tested by Enterolab.com. Glad I did, I got the genetic info too and could pass that along to my siblings and their kids.

[amymm]

Thanks to everyone for the responses. I'm really just so burnt out on doctors. Some have been really great-others not! I know something is going on to cause my other autoimmune issues. I have had a lot of doctors just look at me and scratch their heads.

I did remember some more wording on my biopsy report. It said something to the effect of "infiltrate of the lamina propia". I can't find the report for the life of me!