brand new AA patient with celiac disease

[susansr]

New to aplastic anemia; was in hospital 2 weeks ago for treatment of ATG; now taking daily doses of prednisone, tacrolimus, and assorted other meds.
Platelet levels very low but doc holding off on transfusions. Meds make me feel so weird; shakey, tremors. Anyone else on this type of maintenance?

I was also diagnosed with celiac disease, about the time my blood problems developed. anyone else with this unusual connection?

[Neil Cuadra]

Welcome to the forums.

Kirby Stone, one of our forum members, was found to have MDS two years after being diagnosed with celiac disease. See his forum post about it and his personal profile for more of his story.

You might also want to use the search page to do searches on the word "gluten" and the word "celiac" to see where else they've been mentioned.

[Marlene]

Staying gluten free is a tough one. Even though John does not have a gluten/wheat issue, we still try to keep our wheat intake low. Wheat is hard on our systems.

Have they checked your nutritional status yet? As you probably know, celiac causes many nutritional deficiencies and it can take awhile to restore the imbalances. B12, folate, b6, copper, zinc and iron are critical to blood production and proper DNA/RNA expression.

Marlene

[triumphe64]

Many people have more than one autoimmune disease. Celiac disease is autoimmune.

http://www.labtestsonline.org/unders...ns/celiac.html

[susansr]

Dear Neal:
Thanks for replying; its so strange to me to get hit with both of these diseases. Of course the celiac is very easy to follow the diet and alliviate the problems, which of course I was asymptomatic.

But living with AA, is really throwing me for a loop. I'm just 3 weeks out of ATG treatment, living on all kinds of meds, and going from clinic appt each week and seeing what's needed: platelets, and/or rbcs.

Have any advice coping with illness? Does one really find out in 4-6 months time if regime really works?
Susansr

[Gloria J]

Hi Susan,

I was treated with ATG for SAA in Apr '08 and it took almost eighteen months for significant improvement. Here's how I responded to ATG, and keep in mind that everyone's experience seems to be unique.

My last transfusion was early June 2009, and my Hgb has been in the 9.5 - 11.0 range since then.

The WBC bounces up and down, by I'm generally not neutropenic (ANC stays over 1.5), and my platelets have stayed in the 30s and 40s since last July (much better than the 5-10 range where I was for too long). Platelet transfusions never provided more than a temporary bump up for me, and I generally didn't get one unless they dipped below 10K.

RBC Transfusions generally raised my Hgb one point for each unit. Eight months post-ATG, I was averaging five weeks between transfusions, at the one-year mark, I could go eight weeks in between.

I remember taking close to 20 pills a day right after the ATG, and the side effects were not always pleasant. My response took a long time, but I'm feeling great these days. Much more energy, lot less meds, lot less clinic visits. Don't be discouraged if you feel lousy for a while, but do push yourself to do what you can. Exercise always makes me feel better, and it helped me to lose the weight I gained because of too many meds, and too little activity.

Are you taking Cyclosporine? I remember my palms tingling, and my hands trembling. Make sure they monitor your trough level of CSA, it may be too high. You should be tapering off the Pred soon, that alone will make you feel better.

Hope you're better this week, and keep a positive attitude. Let us know how you're doing.

Chin up!

[susansr]

Dear Gloria: thanks for the info; I was rather surprised that it took up to 18 months to feel better.
Did you need a 2nd ATG treatment? My doc was saying we evaluate things after 4-6months; sounds like things are very much under control now for you;. not needing transfusions very often, yeah!

I am just starting to wean off prednisone; it gives me the tremors, big time, and of course has distorted my face shape (touch of the chipmunk look); instead of cyclosporine, my doc has me on tacrolimus.

I appreciate your words of encouragement. what's life like now for you?
can ya actually forget you have this disease?

[Gloria J]

Hi Susan,

Every day, I look at my palms, and think, are they pink enough?? It's hard to forget your diagnosis when you know you could relapse at any time. But I just ignore it and get on with life. I travel, I garden, I exercise, I work, I try to feel as good as people tell me I look these days.

I was asked to consider re-treatment at one year post-ATG (Apr '09), but I asked to wait until after the summer because I was feeling so much better, and I was going about seven weeks between transfusions at that point. I'm REALLY glad I waited, because that June was my last transfusion.

You, too, will feel so much better after you go off the prednisone - it is a truly evil medication. It never did me any good, just made me feel absolutely miserable. Hang in there, and don't feel discouraged if you don't see improvement in the first few months. Every day, you'll feel a little stronger, and more yourself.

best wishes,
Gloria

[susansr]

Dear Gloria j: you stated they asked you to reconsider more atg after 1 year; do you remember where your platelet and/or rbc counts were?

That's great that you held off. You stated you are still on cyclosporine/does that effect you?

Last question: have you attended any of the conferences sponsored by the AA and MDS foundation; might you go to the one this summer in Bethesda?
Susansr

[Kerryc]

Originally Posted by susansr

New to aplastic anemia; was in hospital 2 weeks ago for treatment of ATG; now taking daily doses of prednisone, tacrolimus, and assorted other meds.
Platelet levels very low but doc holding off on transfusions. Meds make me feel so weird; shakey, tremors. Anyone else on this type of maintenance?

I was also diagnosed with celiac disease, about the time my blood problems developed. anyone else with this unusual connection?

Hi Susan,
I have aplastic anemia. I was treated with Atg and cyclosporin in Dec of 2011. I was quite ill for 6 months but am doing well now. I am currently on tacrolimus . I do get hand tremors on this drug. At times my whole body feels a little shakey. I have come accustomed to it now.
Kerry

[Sally C]

Hi Susan,
My husband has MDS and also some type of colitis (they really can't figure exactly what it is). They believe his MDS has an autoimmune component as do colitis and celiac diseases. From what I just read on the internet, AA can have an autoimmune component to it as well so there could be a connection.
God Bless and I wish you well,
Sally

[JeriM]

Hi,
I, too, have more than one autoimmune disease. I have many food & environmental allergies, plus celiac disease, and now, aplastic anemia. At this point, I am considered "moderate" and am treating strictly from a holistic viewpoint, with yoga, acupuncture, saunas, tai chi, juicing, and a very careful rotation vegan diet. I was doing well and my counts were starting to slowly inch up, and then this past weekend ended up hospitalized for 3 days with intense pain and vomiting, due to a poorly functioning colon from the celiac. The stress from that apparently caused my platelets to drop to 25k and wbc's to drop to 1.4. So back to square one. Does anyone out there have any experience, good or bad, of treating with a wait-and-see, holistic path?

[Hopeful]

Hi JeriM,

Be careful that you are getting enough iron and magnesium in your diet. This is hard to do if you are on a vegan diet, have low platelets and are pre-menopause. Have your serum ferritin checked every now and then to ensure that you don't have a deficiency.

My doctors were pretty insistent that I eat meat (organic, grass-fed ), but I understand that isn't for everyone.