Thrombocytopenia, Prednisone and Suspected Celiac

[ChiaChick]

Hi all,

I will endeavour to make a long story short...

Platelets 66 (Marked Thrombocytopenia) (Reference range 150-400)

Slightly low white cells

History of  test results that show mild liver damage (and my father has this also)

As a child: Easy bruising, leg pains, underweight, ulcers in mouth, recurrent tonsilits, cold sores

Teenager/Young adult: Severe difficulties with menstruation (pain, heavy bleeding), recurrent cystitis (often), thrush (often), panic attacks, reflux, diarrhoea, periods of difficulty swallowing (mid-late twenties), marked sensitivity to cold, sore neck at base of skull (still persists), excessive hair shedding, moodiness/depression

30s/till now (44yo):  depression persists, memory problems, cognition problems, especially finding words, difficulty concentrating on anything, constipation, recurrent miscarriage, sore glands in neck, urinary frequency, sore jaw, facial pain, itchy rash on scalp (doctor said excema), itchy (insanely) groin but with no rash has not responded to anti-fungals, nor topical steroids (the latter brings relief, but it comes back), tested negative for syphilis, occasional small fluid filled blisters on hands, especially after dust exposure (very itchy), also recently got a blister near my elbow, general itchiness all over, diagnosed with Pleurisy/Costochondritis/Tietze Syndrome at different times; from what I can figure these are pretty much the same, after epidural I had marked numbness/difficulty standing or walking, asthma, diagnosed with mitral valve prolapse, then second doctor said I did not have this, fatigue in upper arms and upper legs in particular, off balance/stumbing, shortness of breath, numbness/tingling in hands and feet, burning sensation in feet, recurrent miscarriage, very frequent infections, unusually long time to wake from surgery, and crashing blood pressure after every surgery, very Low BP in general, Extreme Lethargy, Sinusitis, Bowel Issues, Bloating, Headaches, Bruising, Aches/Pains, Dental problems, I have adverse reaction to dairy - lots of grumbling in particular.

Surgeries: Tonsilectomy. Endoscopy/Colonoscopy - Colon infection a week later resulted in haemorrhage and hospital for 6 days. (no biopsies were taken as the scopes were a check due to family history of cancers), Ganglion removal (two surgeries), D & C - miscarriages

Due to the Thrombocytopenia I have been on doses of up to 25mg of Prednisone. It brought about a good recovery of platelets (now 198), the dilemma is that the doctor has advised that it will bring false negative results for Celiac Testing. I did a 5 day gluten-free test, and on the fourth and fifth days, I noticed great improvement in how I felt. I went straight back onto gluten for the blood testing. Bloods were taken yesterday for both genetics and screening. Today the Hematologist told me that I need to stay on Prednisone long term (They have tapered me back to 10mg). It now seems I am stuck between a rock and a hard place: Prednisone will bring about a false negative on Celiac screening, but eating gluten is quite likely causing the Thrombocytopenia. No other cause can be found, and I have had a Bone Marrow Biopsy, Full Body Bone Scan, Brain and Full Spinal MRI, countless blood tests; including for Lupus, Leukemia etc. I have had ANA, ESR and all the rest, with nothing to show for those.

I am thinking that it is pointless to continue eating gluten if the prednisone is going to mask any opportunity for the doctors to be able to find anything on biopsy. In addition, I have been eating a "low" gluten diet for years which I am told will also make diagnosis more difficult. I have been reading as much as I can about this, but I am quite the novice, and I am hoping for some opinions from those of you who know much more. Is the blood test likely to be skewed by the amounts of prednisone I have been on?

A few other things: We live in Australia. Our family ancestry is Celtic, English, Northern European. Both of my two sons are showing signs of gluten problems. Master 9 has yellowed teeth, leg pains, ADHD, Learning Difficulties, Dyslexia, ODD, Sensory Integration Disorder, a history of diarrhea, urgency, dairy intolerance amongst other things. Master 7 has a constantly bloated stomach, recently complaining of pain in stomach and having nausea with occasional vomiting. Lately he seems tired and grumpy. They were both tested yesterday for Celiac. Both are on a full gluten diet, and will remain so at least while we wait for the blood results (should be Tues/Wed) 

Interestingly, my husband (2nd marriage, and not the boy's biological father) is underweight, and has started itching like crazy and having pains in the stomach since we increased gluten for the blood testing - so we got him tested too.

I am tired of being useless to my family, being laid up in bed, feeling like death warmed up, with no energy to get out of my own way. Your thoughts on the likelyhood that I do actually have Celiac, or Non-Celiac gluten intolerance would be appreciated. I can't stop trying to guess which one, but I am certain I at least have one of them. Seems likely that we are all sensitive to gluten in some way. I would also appreciate any thoughts on whether Prednisone does mask blood results and Biopsy results.

Thank you

[SLLRunner]

Welcome, @ChiaChick,

I am sorry you are not feeling well. Celiac can cause a multitude of health problems. If I were you, I would get tested. This means you need to eat gluten 4-8 weeks prior to the blood tests, and 2 weeks prior to the endoscope, not just gluten light.

It's good you got your sons tested, too. However, with your health problems, even if their tests come back negative, or even if they don't have the gene showing predisposition to the disease, it's important you get tested because of your health issues. 

Finally, not everyone is sensitive to gluten. It's just that some people do not react well to it, just like some people are intolerant or allergic to other foods.

[ChiaChick]

30 minutes ago, SLLRunner said:

I am sorry you are not feeling well. Celiac can cause a multitude of health problems. If I were you, I would get tested. This means you need to eat gluten 4-8 weeks prior to the blood tests, and 2 weeks prior to the endoscope, not just gluten light.

Thank you for the reply SSLRunner. I had the blood tests yesterday (Genetic and screening).  I would continue with a gluten diet if it meant that I could get a diagnosis, (and that has been my intention) but the haematologist today told me that the amount of Prednisone I am on, combined with years of a low gluten diet will undoubtably bring false negative biopsy results if I actually have Celiac.

I have had an MRI of my brain, and it shows "a single white matter hyperintense focus in the right juxtacortical white matter". I am waiting to see the Neurologist concerning the Neurological problems I am experiencing. The spinal MRI also shows that I have 5 vertebrae with Hemangiomas. (Not convinced this is relevant, but thought I would include it just in case).

My concern is that I already have Neurological damage, and increasing gluten intake seems likely to make it worse. I only have one brain, and once it is fried, I don't get a new one. The Haematologist said that Celiac was a plausible explanation for my bloodwork, and said that it would be best to go directly to gluten free, as they cannot reduce my Prednisone further for quite some time. So it is a catch 22. The question 66 million dollar question is "Is Celiac/gluten intolerance causing the Thrombocytopenia?", if so I will remain on Prednisone while I eat gluten. They won't take me off Prednisone until my platelets remain stable. This won't happen if I keep eating gluten. The only likely way to get off the Prednisone is to stop eating gluten. If my Platelet levels stabilise after stopping gluten and continue to remain stable if Prednisone is reduced/eliminated, then it is likely that I must remain off gluten to keep it this way. Theoretically, I could then challenge gluten again to see if my platelets reduce again, but I am struggling to find a good reason to go backwards when the result is far from guaranteed.

There is always the hope that the genetic test will come back negative, which would rule Celiac out. On the other hand, my boys being tested may bring about a positive result in them and subsequent biopsy may confirm it. If this is so, then they may be able to diagnose me based on my bloods, symptoms and family history. I sure don't want my boys to have Celiac (or any other health problem), but the reality is that I know that something is wrong. We are also intent on exploring the possibility that there is some kind of genetic problem in our family. My cousin's children have some problems also.

I have been doing a fair bit of reading on other posts, and think this site is a wonderful source of information and support. I really appreciate how much time so many of the experienced members take to help us newbies out. I really feel for the kids, and the parents of kids who are sick too. It is the pits to watch our children suffer and not be able to take it away for them. (At least not instantly like we would like). I felt terrible having both my boys have blood tests yesterday! I hate anyone suffering, so on one level it is disturbing to realise how many people are going through what I have been going through - and worse.

[Gemini]

Chiachick.......yes, prednisone can skew Celiac testing because it's an immuno-suppresant and you are looking for antibodies in the blood work.  They even use prednisone to treat refractory Celiac.  It should make some of your Celiac symptoms calm down or go away temporarily but that is not optimum, is it?  You want answers.

From your history and that of your children, plus your ethnic background, I would say you have a very high chance of having it.  As I was scanning your post, I kept thinking how much like a Celiac your symptom list reads.  Add to that ITP, which is an associated condition.  My co-worked has ITP but he was older when diagnosed and the docs aren't even looking for Celiac.  Shameful.

Have you been offered other treatments for this?  I am in the US and there are a number of treatments available instead of prednisone.  Here is one which my co-worker had done because he did not like the side effects of prednisone......Open Original Shared Link  They had him on a much larger dose than you and he only did that for a short time before he said enough of that!  The IVIG treatment worked pretty well but he ended up having about 3 in total, over time, because they don't last forever and they are very expensive.  Insurance covered them here but you are tied up for a day being infused and if you have any major stress in your life or catch a virus, it can crash your platelets, which is a common thing with autoimmune disease.  Then you get to have an emergency infusion to pump those platelets up.  He is now on a medication that causes your bone marrow to pump out a lot more platelets...it stimulates production in the bone marrow so, even if your autoimmune system keeps killing them off, you still have a decent amount because of increased production.  He is happy with that one as there is no need to be on immuno-suppressants.  I can get the name of the medication for you, if you have an interest.  His platelets usually come in at about 65,000, which is good for a person with ITP.  Personally, I firmly believe that underlying Celiac Disease can be one of the causes of ITP.

I would see what happens with your kid's testing because if they do have Celiac, then it's looking pretty good that you may have it also.  There is probably a Celiac gene in there too.  If you have any other questions about ITP, feel free to ask.  I hate to see you play Russian Roulette with your health and platelet levels by keep going on and off the diet. If you cannot get answers for Celiac, then consider going strictly gluten free anyway.  If your platelet levels improve and you stabilize, then your body is telling you something important.

I hope you feel better soon! 

 

[ChiaChick]

@Gemini,

Thank you for the time taken to help me. Much appreciated.

I would be very interested in knowing the name of the medication your colleague is taking for the increase in production of platelets. I had hoped that they were planning on weaning me off the Prednisone. 

I have not yet looked at the link you provided, but I will later today. (mid-morning here in Australia)

Two days ago (after seeing Haematologist), I decided that it was futile continuing with eating gluten with the idea of being tested further. I took a PicoPrep (clears the bowel), and have been working on being gluten free since then.

I had friends over for lunch yesterday. Due to having been ill, one of my friends insisted on making lunch. (You know where this story is going already). We went through everything she was planning on using: Chicken, Olive Oil, Mustard - checked the jar, Lemon juice, Avocado, Tomato etc - All yes. Awesome. Just as we were finishing lunch, she mentioned buying the chicken already cooked, and peeling the skin etc. Oh dear. Here in Australia, the pre-cooked seasoned chickens contain gluten. Day one, and I stuffed up. Didn't take long. First of many lessons learnt.

Second mistake: I made home-made Strawberry Ice Cream for dessert. No gluten here I am sure. Problem: I have barely been eating any dairy for years (Only natural yoghurt and cheese). My stomach did not stop with growling and just felt unsettled. I survived though. My stomach problems are no-where near as troublesome  as many here. experience.

Today: My gorgeous husband brought me in a Gluten free Up and Go (already opened). I felt obliged to drink it, and you guessed it, my stomach is gurgling. No more dairy for me for a while. (except maybe the yoghurt and cheese that I seem to cope with - we will see). I have explained to hubby, who now feels bad for giving me the drink.

I am taking the Acidophilus I mentioned previously somewhere (which has 10 strains). I am trying to figure out if the multi-vitamin I have is gluten free.  I will call the manufacturer Monday. All I could find is that it does not contain wheat. Not enough information.

Yesterday I have made a stew with meat, lentils and veggies. I just had some because I was hungry and didn't know what else to eat. I am certain this is gluten free. Lets see if I can get through today without stuffing up. One day at a time I guess.

I don't even know where to begin with beauty products etc. I will just use bare basics until I can check out our stuff. 

I am counting down the time until we get the blood results back. I am busting at the seams for the results. I just hope that the "Celiac screen" that the doctor ordered covers all the relevant tests. It was spelt out on the kids ones, but not on mine. 

I did make a mistake in what I said about my Ancestry. I spoke to Mum, and yes - the Celtic is well and truly there as I said. The Northern European however is not so much. Probably doesn't make much difference, but I like to tell it as it is. I have obviously messed up what she has told me somewhere along the line. (Easy to do when your brain is as fuzzy as mine)

Well, that is more than enough rambling (sorry folks). I will post when I know the results of the tests. 

 

[Gemini]

I spoke with my co-worker this morning and he was only too happy to help!  The name of the medication he takes is
Promacta. It is a synthetic protein that stimulates the production of platelets in the bone marrow.  It  is not an immune-suppresant, which is always preferable.  We are in the United Sates so what is available in your country may be different. It is also insanely expensive, as meds are in the US, but our insurance system covers the cost....or at least the insurance we have through our work covers it.  It can be complicated here.  You may be able to get this where you are and it will probably not cost as much as you have a different system.

The other medication is called N-Plate and that is an injection you have once a week.  That kind of limits you traveling because you have to make sure you receive this injection once a week.  I believe this in not an immune-suppresant either.  My co-worker did not use this because he likes to travel and that would have been problematic for him.  These are 2 options and there are more.  He suggested you go to: Open Original Shared Link

Have they pestered you about removing your spleen? 

Don't sweat any mistakes you make with the gluten-free diet.  We all do in the beginning.  I also see why you may just opt to go gluten free without a definitive diagnosis.  You are between a rock and a hard place and the wait times for an endo can be long. I would go gluten free myself if I were in your shoes because it is important. ITP is an associated condition to Celiac because it is an autoimmune disease. You have the ability to trip for other AI's with Celiac, if you are still consuming gluten. Don't get me wrong....you could trip for more AI disease even being gluten free but the odds are much slimmer.  I have 4 AI disease in total and I believe it's because my Celiac diagnosis was missed for so very long. I am happy to say it's been 11 years gluten-free for me and I have not had any more rear their ugly heads. 

[ChiaChick]

I have some of the results of our testing...

The boys test results for Celiac Screening came back negative. We are still waiting on the genetic testing for Celiac and some other genetic testing. My eldest son's glucose levels came back quite low, (2.7) and he had eaten a good breakfast not too long prior. His urea was also high (7.3). We are seeing the doctor about that tomorrow.

My husband's tests came back positive for the screening. I will post that in a new thread, asking for some interpretation, as we have not seen the doctor yet, and I am not sure exactly what they mean.

My screening results came back negative, as was expected due to the Prednisone if nothing else.

@Gemini

Please thank your colleague for his kindness in sharing his knowledge to help me.

I have done a bit of digging, and it seems that the Promacta (which has a different name here - but same drug), is not offered on our PBS (Pharmaceutical Benefits Scheme). It is only used in certain situations (e.g. AIDS patients and patients with Hepatitis), so I don't believe I will qualify as I do not have either. I will ask the specialist next time I see him. I will also ask about the N-plate. They have not yet pestered me about my spleen. I think they are trying the bombard me with Prednisone approach first. lol

My latest Platelet counts show that I have dropped from 191 on 15 April to 173 on 21 April. It is still in the normal range, but falling. It is an indication that as the Prednisone is tapering, that my platelets are heading south. The doctor had hoped that once they got them up, that they could taper the prednisone and that my platelets would remain stable. Time will tell if they plateau at an acceptable level. 

Despite testing in the normal ranges for Celiac screening, I intend to continue eating strictly gluten free to see if it helps improve/stabilise my platelet levels over the longer term, and see what other changes if any it brings about for my general health situation.

Thank you again for your input Gemini and @SLLRunner  

[ChiaChick]

@cyclinglady, this is the thread I referred to in the post about my husband's test results. I think I will call hubby ChiaChap from now on, as I think he will need to be eating some Chia soon too. lol

When/if you have some time, I would be very interested in your thoughts on my situation. I have read a whole bunch of threads that you have commented on, and I know that you know your stuff. I sincerely think that many of the posters here know more than the doctors about this area of medicine.

Again, tis past time for me to get some sleep. It is after midnight here in the land down under.

Jenn