My Confusing Story:

[BenVenit]

I am so surprised to see so many people who had the same experience as I have. I can only imagine that much of this is environmental if it is not caused by the gene.

I have had this problem since 14. I stopped eating because of the pain of eating and immediately was labeled anorexia. Because of the, no other symptom mattered. I went YEARS trying to eat whole grain healthy etc....years. When it was at it's worse 2 years ago after almost 20 years, I had:

1. Parathesias severe up to my knees and in my hands and lips.

2. Thrombocytopenia, leukopenia, neutropenia: ALmost had to have a bone marrow biopsy!!!

3. Terrible pain in my side- right upper quadrant

4. Arthritis bad enough that there were times I could not stand up straight.

5. Dizziness, numbness,

6. Pre ventricular and pre atrial heart contractions.

and still they just said I was crazy. One Dr looked at me, I am normal weight now, and said, "Anorexia is chronic." I said, "I am actually 5 pounds over the "normal" now!". She said, "You look thin to me!"

Next, "What about this pain in my side.It is not going away..." She breezed her hand up- literally- and said, "Muscle spasm"

So I said, "What about the low blood counts?! Is that in my head?" She said, "What low counts?" She had not even looked.

I fired her and got a much better dr. I went to a neuro because my legs were going numb up to knees!! He asked me who the PRes. was, what my birthdate was, tapped on my a bit like the MIddle Ages and said, "I have no idea" In my chart it says, " I could find no reason for this lady's distress. " But he did mention that I have celiac so I am glad it is in my chart, but he put it in there because I told him I had it out of desperation to have a reason for all these problems. Prior to that I was not tested.

The hema was very nice and will monitor the blood counts. He was more concerned about lymphoma than celiac. He was really smart and knew his stuff so any lack is not his fault but that specailists are no longer trained to see the big picture when things hit systematically.

The heart Dr was really good, too and did sonograms and discovered the arrythmias but said they won't kill me. He also did not think to ask about gluten.

So I myself was getting po's. It was NOT in my head.....so I just went off gluten and tea and dairy and soy and anything else...........NO ONE put it all together.

But I wanted to know if I really had celiac. So I went to a quack specialist who ran $6,000 worth of blood on me!!! He DID the celiac gene test, but all the tests were messed up. He said I had hemophilia which sent me off to another specialist in terror that I was a a carrier. But it was not true. I do not have hemophlia!

So, I do not trust his other tests which said that I do not have the gene but showed Igg registering even though I had been off gluten.

I am sorry this is so long. It's been so hard to find out. So no, I have not had the gene test in a proper setting. The IG test that was + was from the quack and was after being gluten free.

So I don;t know. I do not that after I stopped gluten many of the things up there got much better. They kick up when I eat the wrong foods. Right now I am in a lot of pain so I have done something wrong. I think it's from eating food from a bulk store where things get contaminated.

Well, thanks for being here, you all! :-) It's been rough.

[ravenwoodglass]

Gee sounds like you must have the same doctors I had. LOL. It seems with today's heavily specialized medicine that we are treated like a puzzle with pieces that they never put together. Too bad most doctors never look at the whole person.

Trust your body. I am glad the gluten-free diet is helping and hopefully the blood irregularities will normalize with time.

Do stay away from bulk bins. As you have learned the hard way they are not safe for us. I hope you get over the glutening soon. Do make sure you are doing what you need to do at home to be safe, not sharing condiments with gluten eaters, replacing your toaster etc.

[tina a]

hello. i am new to this all as well but i do not have celiac disease. actually i tend to think it would be a whole lot easier if it was just gluten i had to worry about. i am intolerant to gluten, dairy, eggs, and soy. soy is the real killer for me. i get sweats hourly from it.

so i just wanted to tell you to be very careful of what you eat. soy is hidden in a lot of things as well as gluten. i have known about my intolerances about 2 months and i am about 50% better. sometimes, some people it even takes longer. i have been experiencing these issues for 10 years and noone knew why either. then i lucked out and found someone who did the right testing with blood and tada. an answer.

so hang in there and eat whole foods not processed. chicken, fish, beef all can be seasoned with spices its the processed spices you have to watch.

fruit, vegetables.

and i have also heard of people having a problem with night shade vegetables such as potatoes. i'm not too familar with that but i'll be looking into for myself soon cause i think that might be a problem here too. ugh.

so i wish you luck and i hope you find comfort in the fact you are not in it alone....tina

[MelindaLee]

I wasn't clear if you had an answer for the upper right quadrant stomach (abdominal) pain. Mine was gallbladder. It was through this and ruling out anything else that they found my celiac. It is common in celiac to have gallbladder issues.

[Mari]

If you could get copies of your lab work - the gene test, the antibody tests - and post them here we may be able to tell what they mean and why the Dr thought the gene test was messed up.

After 5 years gluten-free/cow df I still get tingles in my legs - it seems to be a reflection of muscle spams, cramped areas and trapped gas in my gut. The solar plexus, a main nerve center is in the mid abdomen and the nerves which go to the legs come off that nerve center. For years I thought I had an uneven heart beat and spasms but it turned out to be intestinal spasms. Sometimes I still have numbness in my hands when it is cold. I had an arthritis - like extreme pain and swelling in knees and wrist which cleared up after about a year gluten-free.

[BenVenit]

Thank you all for your answers!! As far as the gene test: The quack tested me for $6000 of tests. Thank goodness insurance paid, but the results were off. He tested me for many things I do not know why. Like candida, and hemophilia and MTHR factor gene and a lot others. He did it for the $.

So the tests results showed that I had hemophilia (factor 8 issues) and though women can't have it they can bleed out if that makes sense and are carriers. He said I could also have that other disease of bleeding that I can't recall. Von Wildernbrand? Then he also did a test to see if my blood clots slower, like ATP or something. They all said I had a bleeding disorder! Even the lady at the lab was like, "This is a lot of blood........don't pay if your insurance leaves any..." And no one could tell me the cost.

I even seizured during the blood test because I get vaso vagal. It was 16 vials of blood! I really had no idea.

Turns out that he was scamming, but he got his $ ........

Well, these were a great concern because I have male kids who can get hemaphilia if the mom is a carrier. So I went to a hematologist freaking out and he tested me for all those things and said NO WAY. THAT GUY WAS A CRACK. REPORT HIM NOW. I didn't because I was exhausted.

So with THAT back story, you can see why I am not about to trust his other tests. And you can see why health care costs are skyrocketing. It's Dr's who just do what they want for the insurance $$. It's not people who are in oain looking for answers. All I needed was one or two tests. That was all!

The ones related to celiac were the gene tests and also the IGG. The IGG was mildly + after a year w/ no gluten and the gene test was negative. So I still don't know because his other tests were totally in error on every level.

There is obviously something systematic going on but a real Dr. tested me for autoimmune, lupis, etc and things that would cause all the symptoms. They have been negative.

So who knows? I can tell you it is not in my head. How can I manufacture low platelets, right?!

I just stay away from anything, gluten, soy, dairy, etc etc etc and eat about 5 foods. It does not bother me anymore. The other way is much worse.

So I will have to wait and see. So far most things are better off gluten! So that must tell me something!

Well, I hope you all have a great day......