MCD and Gluten Free diet

• By johnh
• Posted July 30, 2008 at 6:20 am

Amelie:

Thanks for pointing this out. Celiac.com is a great site. I was actually gluten-free for 4 months when my MCD relapsed this Spring. So I don't think eating gluten or not eating gluten has a relationship to my MCD. But my GI symptoms disappeared so I suspect celiac. In May I began eating glutenous foods in order to get tested. Earlier this month I had blood tests but the antibody indicator IgA was low, making the test inconclusive. Prednisone apparently can do this. So I am scheduled for endoscopy on Aug 15. Could be celiac or just a wheat intolerance. The other autoimmune issue for me now is what seems like rheumatoid arthritis, swelling in my knuckles, wrists and elbows, particularly in AM. It could be predisone withdrawl. I finished my taper on July 4. My theory for my multiple autoimmune problems is that prednisone, though it does lots of good things also disrupts healthy processes. It seems like I have a lot of health issues but I am actually pretty healthy.

John

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• By amelieMA
• Posted July 30, 2008 at 2:55 pm

Hi John,
This MCD is really a mystery and I get the feeling that the doctors are also in the dark and trying this and that to keep the patients on a dosage of medication that keeps them reasonably well. Steven is suffering from these awful swollen feet and it makes his life so difficult as he is normally a physically active guy and now has trouble just walking. he is very tired too this last week and sleeps a lot. I wonder if that is a relapse or the cyclosporine......more after we see the neph. next week.
Amelie

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• By amelieMA
• Posted August 4, 2008 at 11:03 am

Steven now has been on the glutenfree diet for two weeks and we don't see any change. All I can say is that I read others on this site with MCD do a lot better
in the fact that they go to work and seem to lead a fairly normal life while taking the meds that the nephs have prescribed. Steven is almost bedridden because 1) his feet are so swollen that it hurts to walk and 2) extreme fatique. He now is being weaned off prednisone - 10 mg every other day - and is taking twice a day 100mg cyclosporine. In fact we think he is a bit worse then he was before. He was diagnosed with MCD in Sept. 2007. Any comments?
Amelie

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• By johnh
• Posted August 5, 2008 at 5:53 am

Amelie

Is Steve steroid resistant? Is that why he is being taken off prednisone? When I had nephrotic syndrome I had so much fluid in my abdomen that I did not absorb oral prednisone. What worked was going into the hospital for a few days of IV steroids.

The fatigue is brutal but he should keep moving anyway he can, bicycling, rowing etc. My best, John

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• By amelieMA
• Posted August 5, 2008 at 10:43 am

Hi John,
You are always very good at answering. We do not know if Steven is steroid resistant at this point. The prednisone did help him to get a lot better from how he was at the start in Sept.2007. I think that maybe the extra edema and fatique might be a withdrawal symptom. Now the physical exercise is even more difficult as he has developed what looks like a strange infection inside his big toe. Painful. He sees the family doctor later to-day after my urging to not leave it any longer. We will find out more on friday as I have a list of questions for the neph.
TTYL,
Amelie

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• By hope4health
• Posted October 16, 2008 at 1:52 pm

HI Amelie,
wondering how Steven is doing. I too have been pretty incapacitated from my MCD since diagnosis in March 07. But recently, I've started to feel better even though my protein is still leaking like mad at 9 grams. I think its because I'm finally off the Prednisone (since 9/15) which didn't help at all.

I have a question for you: How has the gluten free worked? I've been gluten free for only one week and feel so much better. I'm hoping this may be my answer.

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• By amelieMA
• Posted October 16, 2008 at 2:02 pm

We gave up on the gluten free because it did not seem to help and steven proceeded to get a very painful attack of gout.....likely caused by cyclosporine. It was resolved by a "hit and run" of 60mg prednisone(of all things!!) and disappeared again. He is now being tapered down very very slowly off the prednisone. Now at 5mg every other day. Still cyclosporine of twice a day 75mg. My question for the next appointment is: where are we now? We have been told "another year but not such a bad year as last year!"
How can you know if the predn. did not work if you are feeling better because at the start of the disease steven was feeling terrible, all swollen and no energy and now ha can do a certain amount and sleeps well. I strongly believe in eight hours or more a day of sleep to get better!!
Keep in touch and let me know how you are doing!
Amelie

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• By hope4health
• Posted October 17, 2008 at 10:10 am

I'm sorry to hear about all the complications on top of a miserable disease to cope with.

All the best and I will keep you posted.

MIchelle

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