Anybody Ever Had This

[Babs83]

My brother was diagnosed about twenty years ago with Celiac. At the time they thought he had AIDS. They didn't tell him that if he has it, that there is an 80% chance that his siblings have it. Of course, they think it is rare!! Well, I started getting bad migraines after the birth of my last child 14 years ago. They weren't very often at first but eventually I was getting them every other week if not weekly and they would last for days. I went everywhere, they told it was stress and put me on anti depressants and of course I still got them. I finally got them to do the blood tests for Celiac and of course it came back negative; so I just eliminated the wheat and gluten from my diet. I get an occasional migraine now and again. I don't need a piece of paper to tell me that I have Celiac.

But, what I am actually writing this for is my sister has numerous thing wrong with her. She is diabetic (which runs in my family), has VERY LOW platelets, is anemic, has a fatty liver, they put her on prednisone to get her platelets up which it did at first. But now they are dropping, she has some kind of mump virus now. She is waiting for the results of the mump test (she had mumps when she was little). I told her I think she has Celiac; they did blood test and they came back negitive. I've begged her to have them do the biopsy. She has put too much faith in the doctors, I think she is slowly dying and I can't help her!!

Has anyone else had the low blood platelets?

Thanks,

Barb

[Ursa Major]

Hi Barb, I don't know about platelets, but anemia is one of the very common symptoms of celiac disease. Many people with celiac disease also are diabetic.

Can't you get your sister to maybe try the gluten-free diet? It is a healthy diet, and she might just start feeling better.

[alamaz]

I don't have much advice for you other than to say I share you experience somewhat. I was recently diagnosed, the first in my family. I know to tell my family they all need to be tested and none of them will. My father hits the bathroom after every meal and will joke about gluten-free food saying "i'll be eating that way too pretty soon!" but won't get tested or test the diet. My sister had lots of complications during her pregnancy but won't get tested. My grandmother puts the heat in her house on 60 in the dead of winter and sleeps with a sheet because of night sweats and won't get tested. My sister did go to the pediatrician who refused to test my nieces until they started showing symptoms. I've stopped harping on them about it and started focusing on my own health and managing my disease. As much as it kills me to watch my dad and grandma suffer so many health problems I can't change thier minds on something if they don't want to believe it. If you live close to your sister I can only suggest cooking a week or two worth of meals and letting her see if in that short amount of time she notices any difference. If you find a way that works let us all know!

[Guhlia]

This sort of, kind of relates. Last pregnancy (pre-dx) I had normal platelet counts. This pregnancy (gluten free) my platelet counts are high, but not abnormally so. Perhaps it does relate.

[pedro]

Hi Barb

I am sorry for what you and your sister are going thru.

Did you sister even gone to see a hematologist??

There are other autoimmune diseases like ITP. ImmuneThrombocytopenia Purpura. The platelets count goes down. Usually the doctor give the patients pregnisone or immunoglobulin IV IgG. Also the spleen sequesters the platelets or old cells to dispose them. If the platelets are coated with an antigen not recognized by the body. Then the body will create an antibody to destroy that foreign cell.

My wife has ITP. We went many years ago to see a hematologist to make sure that there is nothing else wrong.

In a pregnacy the doctor will want to know what class is the immunoglobulin belongs to. Since there some of these that will cross the placenta and attacks the baby's platelets.

The platelets are very important, these are the cells that help us to form a plug so we don't bleed when we get cut.

Please make sure your sister goes to a hematologist.

Please take care, and best regards to you and your sister.

[loraleena]

I also have ITP. My platelets are lower than normal, but not too low. I have to be checked every 6 months. This has not changed at all on the gluten free diet for me. What are her counts??

[Babs83]

I also have ITP. My platelets are lower than normal, but not too low. I have to be checked every 6 months. This has not changed at all on the gluten free diet for me. What are her counts??

I'm not sure what her counts are right now, they have been as low as 16,000. She has been to a hemotalist (sp) now she is going to a cancer specialist. Next week she is having a colonostomy. She has had a bone marrow done and they found nothing there. I'm afraid she will start bleeding internally!! Thanks for all your suggestions, she doesn't want to have celiac. She said she might suggest it to the doctor! MIGHT!! I don't think the diet is that bad, I have never been a big pasta and bread eater. I do miss pizza hut pizza!! Do you know of anything that will bring down your LDL? Mine is 158!! I tried some statins and they made my legs hurt, Niacin made me sick to my stomach and my stomach hurt.

[Babs83]

My sister almost passed out at work yesterday, her Iron count went down over a whole point in one week. She is in the hospital today getting 2 units of blood!! Why are some people so thick headed, I told her anemia is the biggest symptom. She has too much faith in doctors.

[loraleena]

Are you gluten free?? I think your LDL would go down on the diet. I don't know of anything that would drop it, but if I were you I would look for natural ways.

[Babs83]

Yes, I am gluten free. Have been for about 6 months.

My sister went to a gastronalogist (sp) yesterday. She had blood tests about a year ago and they came back negative. She is suppose to have a colonostopy and he scheduled it for July 25th (I think), anyway I finally convinced her to ask him about celiac and that she wanted to be tested for it. He told her that the blood tests were about 99 percent accurate and that celiac is not hereditary!! He said he would go ahead with the biopsy since we was going to be doing other tests and that way she wouldn't have to did it later. She was not impressed with him at all; he said something about people doing self diagnoising!! She has so many health problems, anemia, fatty liver, diabetes, low blood platlets, obesity, fatigue the list goes on!! She is very anemic (8.something) he said she didn't have a low iron count, but he would do the blood work; that he thought her bone marrow wasn't making enough blood? She had her bone marrow tested recently; and she was referred to him by a cancer doctor!! I really hate some doctors!!

Thanks for listening

Barb

[Nancym]

The doctor is an idiot. The blood tests are only accurate if you have full villious atrophy, otherwise they miss 30% of the celiacs. He can look that up on PubMed. The disease is very hereditary, gosh saying otherwise means he doesn't keep uptodate and also forgot his schooling.

[Babs83]

My sister got in to see another doctor and he is going to do the endoscopy on Monday, July 2nd. He said that Celiac is very hereditary . And that most of her symptoms are associated with celiac!! I'm so glad she finally listened to me. I about 100 percent positive that she has celiac. I never got the biopsy, because no doctor would believe me when I told them I thought my Migraines were from celiac disease. So, I just stopped eating wheat & gluten and I feel soooo much better. I don't need a piece of paper for that.

[oceangirl]

My sister got in to see another doctor and he is going to do the endoscopy on Monday, July 2nd. He said that Celiac is very hereditary . And that most of her symptoms are associated with celiac!! I'm so glad she finally listened to me. I about 100 percent positive that she has celiac. I never got the biopsy, because no doctor would believe me when I told them I thought my Migraines were from celiac disease. So, I just stopped eating wheat & gluten and I feel soooo much better. I don't need a piece of paper for that.

Barb,

I hope they get to the bottom soon of what's wrong with your sister. I have low platelets and low white cells, pre-gluten-free and they are now returning to normal after a year gluten-free. I think during my pregnancies when they diagnosed me (hematologist) with idiopathic (meaning they don't know why) thrombocytopenia (meaning low platelets) my count went down to 10 or 12? Yikes. I have read some researchers who think this can be linked to celiac or gluten intolerance. I hope you continue to feel better and your sister, too! It's too stressful!

Take care,

lisa

[Janeti]

hey barb,

just wanted to add, my mom had an elevated white blood count ever since she had by brother 44 years ago. no dr really cared to find out what the problem was. she always had gi problems, including having her gallbladder taken out. even after the surgery, she used to say, she couldn't eat eggs anymore...well it wasn't the eggs, it was the toast that went with it. i lost my mom to leukemia last august, those white blood cells matured through the years and took her life. thinking back, i see now that celiacs is in my family, and has been. we all have hashimotos, graves and other autoimmune diseases. sorry, but i think drs suck. nobody knows your body more than you do. they try and convince you of all crazy things, including maybe you are just depressed. i lost my mom for no reason at all, she was too young, don't tolerate an ignorant dr!!!

be strong, janet