Platelets

[loraleena]

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.

[amymm]

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

[loraleena]

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.

[amymm]

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

[nikki-uk]

My husband went to see a haemotologist today as he has consistently had low platelets for the last few months.

He was originally referred by his Rheumatologist as the low platelet count co-incided with him taking a new drug for his Psoriatic Arthritis.

Unfortunately - although the drug worked wonders with his joints he was adviced to stop taking it in case it was this that caused the low platelet count.

However today - the haemotologist said after doing some research that he didn't think this was drug induced and that hubby may have another auto-immune disease called ITP

He now wants him to have a scan of his stomach to check his spleen and liver (?)

The weird thing is hubby doesn't seem to have any bruises ,- although his gums bleed when he brushes them and if he cuts himself shaving he seems to bleed for ages.

Does anyone else have this?-

Can your platelet count flutuate and return to normal without steroids?

Is ITP common in coeliacs??

Thanks (concerned wife!! )

[oceangirl]

My husband went to see a haemotologist today as he has consistently had low platelets for the last few months.

He was originally referred by his Rheumatologist as the low platelet count co-incided with him taking a new drug for his Psoriatic Arthritis.

Unfortunately - although the drug worked wonders with his joints he was adviced to stop taking it in case it was this that caused the low platelet count.

However today - the haemotologist said after doing some research that he didn't think this was drug induced and that hubby may have another auto-immune disease called ITP

He now wants him to have a scan of his stomach to check his spleen and liver (?)

The weird thing is hubby doesn't seem to have any bruises ,- although his gums bleed when he brushes them and if he cuts himself shaving he seems to bleed for ages.

Does anyone else have this?-

Can your platelet count flutuate and return to normal without steroids?

Is ITP common in coeliacs??

I had idiopathic thrombocytopenia during both my pregnancies. Also, low white count. My doctor is curious to see if being gluten-free for a bit more will bring those numbers up. They are not excessively low right now but have always been on the low side. We'll see. Just had some bloodwork done- I'll post if they've come up.

lisa

Thanks (concerned wife!! )

Okay, I just screwed up that response somehow- maybe it can be figured out. Sorry!

lisa

[loraleena]

Hi

I am the one who originally started this post back in April. Yes, platelets can go up and down. A month after my platelets dropped to 84, 000, but 2 wks later they were back up to 134,000. The last number has been my normal for years. I do bruise easy, but that is it. Apparently any infection and several types of meds can cause this. The doc does think I have ITP, but now just wants to test me every 6 months, unless I start having issues. He told me that they do not intervene unless you get to 30,000. At the time of the original low count, I had a active cold sore and suspect that may have affected the count as well. I did have a scan of my spleen and liver and they were ok.

[nikki-uk]

Hi

I am the one who originally started this post back in April. Yes, platelets can go up and down. A month after my platelets dropped to 84, 000, but 2 wks later they were back up to 134,000. The last number has been my normal for years. I do bruise easy, but that is it. Apparently any infection and several types of meds can cause this. The doc does think I have ITP, but now just wants to test me every 6 months, unless I start having issues. He told me that they do not intervene unless you get to 30,000. At the time of the original low count, I had a active cold sore and suspect that may have affected the count as well. I did have a scan of my spleen and liver and they were ok.

Thanks Loraleena.

I'm not sure what my hubby's platelet numbers were but the doc said (other than the scan) he will just see him again in January to keep an eye on his levels.I don't think they can be that bad as he doesn't even seem to have any bruises!

I just dreaded another auto-immune diagnosis!

[TiffTiff]

ive had itp for 7 years i know all about it if you have any ?s feel free to ask, its not as bad as it seems, ive had a child....