amymm

Anyone else with other autoimmune diseases? I have ITP (Idiopathic Thrombocytopenia Purpura), though I'm currently untreated and just fine. It is when the spleen decides to kill off all your platelets until you bleed to death. Great!

Now I'm thinking having Celiac all my life might've contributed to getting ITP.

I have ITP too. I'm 36 but was diagnosed at age 20 by bone marrow biopsy. I spent years on and off prednisone-crappy stuff, but it does the job. In 1999, I had my worst crash-I went down to 14,000. My hematologist at the time just said, "Let's take that spleen out". I went for it, as I really couldn't stand the thought of being on prednisone again.

Sometimes I regret it, but it has worked. I had to spend two pregnancies on that damn medicine-and I hated it. My third baby I didn't take the stuff. I can certainly understand why someone wouldn't opt for the surgery though. When I had it done, it was done laproscopicly (sp?), so it wasn't so bad.

I have been investigated the Celiac connection since the birth of my 2nd child in 2000. I started having terrible GI issues, along with joint pain, muscle aches, skin problems, and numerous other symptoms. Eventually also diagnosed hypothyroid.

I am going to yet another GI doctor in two weeks to pursue the celiac connection. I have negative blood tests, but DQ2 positive, so I'm hoping they'll take me seriously.

My family history in the autoimmune area is mostly type 1 diabetes on my mom's side. I'm really the only one in this generation that has anything serious. Lucky me!

If you want to talk ITP, let me know. I have years of experience!

Amy, San Jose

Hi, thanks for your reply. I read about that and thats what I suspect, since my other readings are normal. I absolutely will not take steroids. I have already started looking into natural alternatives and have found some chinese herbs that are used for this. Obviously I will not pursue anything until I know for sure. Did going gluten free help your levels? Mine are lower since gluten free. How low did yours go? When do they feel you have to address it ( how low can levels get without intervention). This is so lame, I am a walking autoimmune disease!! Thanks for the help.

Hi again. I'm glad you replied. I had my spleen removed in 1999 and this has pretty much taken care of my platelet counts, so I can't say if going gluten free would have helped the platelets. I have read of such an experience.

I wanted to caution you about the chinese herbs. I'm actually very open to alternative treatments myself, especially since I've had many bad experiences with allopathic doctors. But if you platelets dropped below 50K, I would take it very seriously. The same day I read your response, I read about a young woman who refused steroids and decided to take chinese herbs. She ended up bleeding to death because she had 0! platelets in her system, but wasn't aware of it.

I hate steroids myself, spent many years on and off of them and I agree they should be the last option. But they saved my life and my unborn childrens' lives-so they are the worst "miracle drug" out there. Can you get a standing order from your hemotologist to get a platelet count whenever you are worried your count is low? I had that for years and it gave me comfort to know I could have them checked at any time without calling the doctor. Believe me, if they are dangerously low, you'll get a call quick. I once got a call from my OB/GYN on a Saturday morning around 8am-he was freaked because my count was 24K and I was pregnant.

ITP is very unpredictable-please take it seriously if that's what it is. I am happy to talk to you anytime via email.

Good luck and let me know how it goes.

Amy, San Jose

I recently had a whole bunch of blood work done. My platelets (which have always been a little low) have dropped from 141,000 to 89,000. I am not having any bleeding problems, but bruise a great deal. I have to get tested again next week, and if still low I have to go to a hemotologist! Has anyone else experienced this either before or after going gluten free? The 141,0000 reading was before going gluten free.

Thanks for your help.

Hi there. I have ITP (idiopathic thrombocytopenia purpura). I was diagnosed in 1989 at the age of 20. It is an autoimmune disease in which you have chronically low platelet counts with no explaination (hence-"idiopathic").

I spent lots of years on and off prednisone and eventually had my spleen removed. This helped, except when I had my third child, and my platelets dropped again. They went back up after the delivery.

I only found out about celiac/gluten intolerance after the birth of my 2nd child. I really think this is the cause of my ITP. I have read of some possible connection between ITP and celiac.

Don't freak out too much. A count of 89K isn't too bad yet. A hematologist is a great next step. Let me know if you have any other questions.

Amy

Hi Amy, I decided to post it here...I guess that's okay. His name is Sanjay Ramrakhiani (pronounced ram-rock-eee-an-eee), with Camino Medical Group. A co-worker of mine recommended him for the colonoscopy so I was pleasantly surprised that he seemed to have the right things to say about Celiac--it was a nice bonus.

ETA: My next course of action if this didn't/doesn't work out is the clinic that Rachel goes to.

Also forgot to mention his office is in Sunnyvale.

Donna-thanks so much for in the name. I will keep him in mind when I'm ready to see another doctor

Amy

I'm quoting myself, lol. I saw the GI yesterday who seems very promising. I should mention that I went to see him for a colonoscopy preconsult, so it wasn't directly about Celiac, but my Internist wanted me to mention it to him (by-the-way, the Internist didn't find the gluten intolerance either).

First of all the doctors I've seen in this group (Internist, Ear/Nose/Throat, Audiology and now GI) actually listen to you (even if it seems they aren't, lol), and they put everything into the computer, which every other doctor in the Group has access to. All the results of the tests they run are in there too. So if one doctor prescribes something, or diagnoses something, all the other doctors can pull up your chart and see it. So the GI already had a history of my self-diagnosis of gluten intolerance and the fact that my sinus problems are improved since going gluten-free (thanks to the ENT who put that in the record). I said something about not being diagnosed in the traditional way and he said he thought the dietary test was a valid method. Wow. Okay, cool.

He also didn't scoff at my Enterolab report...I don't know that he agrees that it is a valid method of testing, but he didn't scoff or discount it completely.

But, here's what really made me think he might know his stuff. He said we could do a blood test to test for Celiac, and I said that I had been gluten free since November and he said "hum, it probably won't show anything then, but we can take it for a baseline reading." Huh. Great!

Since I'm already scheduled for a colonoscopy he said we could do an endoscopy the same day to look for damage to my esophagus from GERD, and he said while he was in there he could take some biopsies to check for villi damage, even though it probably won't show anything. Wow again.

He thinks I have IBS and GERD but those would be in ADDITION to the gluten intolerance. The last comment he made was about taking a fiber supplement because he doesn't think I am getting enough from fruits and veggies, so he said I should take Benefiber, which he thinks is safe for people with gluten intolerance. Okay, I'm sold, lol. (P.S. I don't know for a fact that Benefiber is or isn't safe for Celiac, but just the fact that he mentioned it floored me, lol.)

So, after all that if you still need the name of a doctor let me know and I'll PM you.

I would love the name of the doctor. Thanks

I'm assuming you have some digestive or other symptoms that make you suspect celiac. Have you tried the gluten-free diet to see if it helps? You could have non-celiac gluten intolerance or sensitivity. The solution would be the same -- the gluten-free diet. Trying the diet is the easiest, and in some ways most meaningful, diagnostic tool. If you respond positively, then you have a solution to your problems, if not an official label from a doctor.

Just a word of warning: going gluten-free will skew subsequent test results, so you would have to go back on gluten if you really wanted more testing. I know alot of people only want to go gluten-free if they have an official diagnosis. Some docs will make a diagnosis based on positive dietary response, but many will not. For me, the important thing was finding a way to feel better. Going gluten-free did that for me, and it doesn't bother me too much that I don't have an official dx. Every time I have accidentally have gluten, I get major D and get patches of itchy red bumps. If I stay gluten-free, none of that happens. I consider that a virtual diagnosis.

I have symptoms galore, including GI symptoms. Have had them since the birth of my 2nd child in 2000. I know I can gluten-free on my own. I want to be taken seriously-as far as I can expect the medical establishment to do so, before I take matters into my own hands.

I'm also just looking for people who have experience with the gene testing and how seriously doctors take those test results.

Thanks for the feedback.

Amy, San Jose

I got my test results from Prometheus labs. They are at the fore-front of Celiac testing. At least Celiac testing that is viewed as credible by doctors.

I tested negative on every test. However, they automatically test for the HLA DQ genes if you test negative. I tested positive for the DQ2 gene, but negative for the DQ8 gene.

What do you think? The test result stated that this doesn't eliminate at diagnosis of celiac. Should I go see another GI doctor? I had an endoscopy 2 1/2 years ago that show "mild plasma cell infiltrate of the lamina propia"-this could be the beginning of celiac. Of course with the negative test results-the doctor said it wasn't celiac. So I'm wondering if I should pursue another endoscopy.

Thanks for your input.

Amy, San Jose

Thanks so much. Do you have Celiac? I have already been tested, over 5 years ago and nothing was found. I want to find a doctor to take me seriously-as I don't look malnuorished! Was it easy to get an appointment with her?

Thanks again

Amy, San Jose

Hello everyone. I'm looking for a doctor in San Jose, California who's well-versed in Celiac. I need one who won't take one look at me, looking very well-nurished and show me the door!

I've read mixed reviews on this board regarding Dr. Gary Gray at Stanford. Anyone care to give me their advice? I'm willing to drive a ways-but not too far.

I don't think I'm a clear-cut easy to diagnose case, so I need someone willing to listen and dig deep to find answers.

Any help appreciated!

Amy, San Jose, California

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!

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!