Immune Thrimbocytopenia Purpura Or Itp?

[momma bee]

Just curious but wondering if anyone out there now has or has had ITP? I am not celiac myself that I know if but am suspicious of it after my toddler was diagnosed in March. Our family all had "testing" but it was not the full panel and I am not sure it was sufficnet for any of us. For the last 6 weeks I have now had ITP (also autoimmune) and it has some cases linked to celiac patients being higher risk.

My big focus now is in treating the itp (which is essentially low platelets and causes bleeding) but I am trying to determine if I should also push for more testing for celiac as well if there is a relationship so am curious if anyone out there has both or knows of the relationship?

Thanks!

[Not crazy]

I had ITP about 13 yrs ago, about a year after my first was born. Counts were so low the lab called my dr who called me late at night and told me to go to the hospital because he was afraid of internal bleeding. It was being treated with prednisone and went away after I got pregnant with my second.

A few months after I had my second I developed ulcerative colitis(also autoimmune) Delt with it off and on for several years. Had a really big flare that wasn't responding to the 20+pills a day I was taking. Ended up having my entire colon removed and now have a j-pouch.

A few years ago I started having bone, joint, muscle pain, brain fog , neurotical systems, anxiety mood swings ,etc. after dealing with several different idiots, I mean doctors, I was told excerise more, given antidepressants and Xanax. Told I had osteoarthritis, and a couple other kinds of arthritis, calcification in my foot and fibromyalgia. Was told I didn't have lupus but was given meds to treat it anyway along with Muscle relaxer and pains pills. When the pain pills didn't work I was told to double the dose.

I cut out gluten at the advise of friends. Couldn't believe how much better I felt after a couple weeks. I' m self diagnosed because I refuse to do a gluten challenge. All the symptoms fit, along with past medical problems I've had. Also have/had low vit D, and some others. I did get genetic testing and I do carry the genes. Stomach/gastro issues that I always thought were because I didn't have a colon are clearing up. If I get glutened the symptoms come back. Did a little test and ate a gluten filled meal just to see if a gluten challenge was possible. It took over a week before I could eat anything at all without feeling like I was glowing to throw it up. And a couple weeks for the brain fog and neurological issues to go away.

I have seen ITP listed with other conditions that go along with celiac. I would push for them to run the full celiac panel.

[momma bee]

Thanks for your reply. Sorry you have had such a complicates time if it!! I know they say the autoimmune issues run together and yours sounds like a classic case, I think perhaps mine as well now (had thyroid cancer in the past).

Think I shall push for the testing to be more sure.... Might as well, what's a little more blood on the daily draws! Thanks!

Glad to hear your itp resolved as well. Mine isn't responding to the prednisone now and they think maybe surgery soon but waiting and watching levels as I wean the prednisone. So nice to hear yours resolved!

[nvsmom]

I developed ITP 20 years ago. It was a fast and serious case. My platelets were down to 2K and my hemoglobin was at 80. I also had a positive Coombs test so I suspect I might have had hemolytic amenia too.  I was treated with prednisone which helped only marginally. They then put me on a few rounds of gamma globulin which got my counts up out of the danger zone. My counts started falling again though so they removed my spleen. Thankfully My platelet counts now remain high (over 150), I was one of the lucky 60% it worked for. 

 

I am pretty sure I have been an undiagnosed celiac since early childhood. i wouldn't be surprised if the resultant inflammation helped caused the ITP to start. Autoimmune issues are genetic, so just the fact that i am genetically perdisposed could be the only link. I also am hypothyroid.

 

Polyglandular syndrome is a link that some doctors see between these diseases. PAS 2 (Ithink) is the one that includes ITP, celiac and hypothyroidism. I found info on that interesting, but not very helpful for anything. 

 

This is a forum devoted to ITP. Open Original Shared Link They might have more helpful advice for you than I would. 20 years is a long time, and there are more treatment options besides splenectomy now a days.

 

Open Original Shared Link

 

Good luck with your celiac testing and your ITP treatment. I hope going gluten-free helps.

[momma bee]

Thanks for all that info! And glad to hear the spleenectomy worked for you... Most internet/forum people active are ones where it didn't work and so was worrying me as heading that way too... Prednisone not helping so weaning and waiting... There are newer treatments but not good options for me as I have some blood marrow abnormalities... So thank you for the positive that yours worked...helps me!

And I will look into that connection too as it might impact me given thyroid history too... Thanks!

Sucks all these life experiences you have gone through... This too shall pass right?

[mommida]

My daughter is having some issues again.  quick history....  Diagnosed probable Celiac when she was 16 months old.  Vomitted blood when she was 6 (bad virus was going around).  Went on to be diagnosed with Eosinophilic Esophagitis.  (The other symptoms leading up to this, vomitting up to 5 times a day, her whole gut hurt, bad headaches, dark circles under the eyes, and general malnutician are standard symptoms~ not vomitting blood.)

A very strict elimination diet to determine what "trigger s"EE.  She has been doing fine.

Now she is 10. She seemed to have had her first period.  Now for 6 months she hasn't had any.  (fine with me.  but starting to think it is just not right. Even though I had started my my period at 10 years old.  There was no gap for this many months.)

 

So now she has been sleeping. and sleeping. and sleeping.  Over the weekend she slept for over 14 hours for 3 days in a row.

 

I have brought her in for tests, and the doctor is taking it seriously.

 

testing includes..

CBC

thyroid

vitamin D levels

estrogen levels and pelvic ultrasound to determine stage of puberty and if cysts are devoloping and rupturing

liver function

kidney

I am probably forgetting a few things

 

But my question to the ITP community is... Can spontaneous bleeding ~ vommitting blood and vaginal bleeding lead to more testing for ITP?  She has no extreme bruising.  Possible that an aunt had ITP.  (She passed away over 20 years ago and medical records seem to have been destroyed.  No family members have any idea of what her medical condition was.  She always had blood testing to check platlet levels..)

 

Waiting for test results sucks!

 

On a side note.  I have found out the strange electrical issue I have has a name.  Street Lamp Interference or a "slider"  When I get upset electrical appliances go haywire around me.  That is why the wireless keyboard has been fighting me through out typing this.

[nvsmom]

Hi Mommida. That doesn't sound like ITP to me, but I am not a medical expert in anyway.

 

When I had ITP, it caused me to not clot well. A minor bruise from walking into a coffee table that would normally be a square inch would instead be several inches across. My periods became horrendously heavy and long. Just before I was diagnosed my bleeding lasted a month; it was so heavy that i used a tampon and two maxi pads that had to be switched every couple of hours or it would leak. I had to change pads a couple of times in the night. Also I had tiny little red dots all over my limbs (purpura) which were tiny little internal bleeds, and my gums were bleeding when I brushed my teeth. I became quite anemic and was falling asleep on buses and was fainting at work... My case was pretty serious though. Most cases of ITP stay much much more manageable - I was unlucky.

 

I believe the only tests they did for my ITP was a platelet count (low), RBC and hemoglobin (low), WBC (bit high), ANA (positive), and a coombs test (positive). Low platelet count was the main test. Docs like counts to be in the low hundreds.

 

If concerned, ask your doctor to check her platelets. I hope she feels well soon.

[mommida]

I just checked some simple sites.

CBC should have a platelet count, but may not have results for Mean platelet count or platelet distribution count.

 

I do have this nagging gut feeling that Eosinophilic Disorders are actually a blood disorder.  These disorders are many treated by gastroenterologists by the systems (and high counts) are through the gi track.  It just makes sense to me to look for the first source of the white blood cells (eosinophils).  You just don't know how POed I get paying a specialist to say "we just don't know!  EE is just a mystery."

[nvsmom]

((HUGS)) Mommida.  

[momma bee]

That is rough... I send hugs too... I agree with nvsmomma that it doesn't really sound like it to me either but am very new to it. As she mentioned with itp it is usually diagnosed almost exclusively by platelet count alone and then other tests are used to veryify it is itp and that nothing else is causing the low platelet counts. So unless they are telling you she has low platelet counts then I would think not too likely to be the cause? I known for me and from reading other peoples stories with itp in general as soon as the cbc test came back with the platelets low enough to diagnose itp the drs told them right away the platelets were too low. They do that so you know to be careful not to hurt yourself and cause bleeding or bruising.

Again though..i'm not an expert and it is new-ishre to me but have done a lot of reading lately! My symptoms and onset and current issues are similar as described with heavy periods, bruises, nosebleeds that don't stop, and I felt dizzy and fatigued when the counts are at their lowest.

I will also add that "they" say the presentation in kids is often different then in adults though and is generally quite acute onset and goes away in general. So don't not ask the Dr about it on our account! At 10 she could be presenting quite different then me at 35 or I believe nvs would also have been a young adult! But fingers crossed not that or you'd know her platelet count!

Looking at the tests it does look like they are looking at a variety if other things so sure hoping they can figure it out quickly! So hard to have a sick child and not be able to do anything about it!!!

[momma bee]

Oh... Also just to add that if the plateleta are low or if there are irregularities in the CBC blood work the Dr can add on or send for more blood testing for sure, sometimes you don't even need to be poked again to do so. So they may get more platelet detail like the mean etc... They also might add in or order a peripheral smear which looks specifically at all the different blood cells more in detail. So if it does look towards low platelets there will likely be more blood to be looked at...

It is hard waiting for results! I can super relate these days myself! Spending hours in the lab each week getting blood draws myself, waiting for results (often never hear) and also still in process of my daughter new-ish celiac diagnosis and follow up for ongoing sleep apnea. We are still suspicious of EE in my daughter as well actually (19 months old) but the scopes in Feb did not show any. Time will tell!! So we can hang in there together trying to get to the root of our girls' problems!

[mommida]

Ok.  Doc called and said it is a vitamin D defiency.  We will start supplementing and get a recheck in a month.

 

I do want to see all the results in my hand, but I will request it for the recheck appointment.

[momma bee]

That is great! Treatable! Hope resolves quickly!

[mommida]

Went for a quick vacation. (Mackinac Island, MI)  She started on the supplements and was very excited about the trip.  She was out in the sun for the past few days and really has regained energy quick!  (Best kind of medicine ~ sunshine and fun!)

[nvsmom]

I'm glad she's feeling good! 

[momma bee]

That is great!!!