Auto-immune Diseases

[BRUMI1968]

Anyone else with other autoimmune diseases? I have ITP (Idiopathic Thrombocytopenia Purpura), though I'm currently untreated and just fine. It is when the spleen decides to kill off all your platelets until you bleed to death. Great!

Now I'm thinking having Celiac all my life might've contributed to getting ITP.

[trents]

How long have you had ITP? My daughter was orginally diagnosed with it when she was 14 but after bone marrow studies the docs changed it to aplastic anemia when she was 16, which is considered to be an autoimmune disease. At one point her platelet count was down to 25,000 when, as you know, the low end of normal is 150,000. It was scary! She is now 20 years old and her blood work has been slowly improving. She has had no medical intervention to this point. The docs have just kept an eye on it. The last two labs put her platelets at 150,000 and 125,000, respectively. This steady improvement has perplexed her hematologist. They are now reconsidering the aplastic anemia dignosis. They just don't really know what is causing this, so maybe we are back to the idiopathic concept. In Sarah's case it wasn't just her platelets that were involved but the reds and whites were also suppressed. The platelets were affected the worst, however.

By the way, I should mention Sarah is not a Celiac, that we know of. I am a Celiac but since she is adopted, she wouldn't be at greater inherited risk for celiac disease, at least not from me.

Have you had marrow analysis done?

Steve

[dionnek]

I've just been diagnosed with celiac and crohns. Go to the dr. tomorrow to figure out what needs to be done about the crohns. And to think, a month ago I had never heard of gluten!

[Nancym]

Grave's disease and Ankylosing Spondylitis.

[Lister]

not diagnosed but docter thinks i have chrons or ulceritive colitis, im rooting for canidid myself

how old are you bully4u

how old are you dionnek

[mouse]

I really hate to scare anyone, but you can read the bottom below my signature. Just remember that I am 64 years old and was diagnosed very late in life. I guess that is why I want the younger people with newly diagnosed Celiac to realize this is not a game, but a life long diet change.

[BRUMI1968]

How long have you had ITP? My daughter was orginally diagnosed with it when she was 14 but after bone marrow studies the docs changed it to aplastic anemia when she was 16, which is considered to be an autoimmune disease. At one point her platelet count was down to 25,000 when, as you know, the low end of normal is 150,000. It was scary! She is now 20 years old and her blood work has been slowly improving. She has had no medical intervention to this point. The docs have just kept an eye on it. The last two labs put her platelets at 150,000 and 125,000, respectively. This steady improvement has perplexed her hematologist. They are now reconsidering the aplastic anemia dignosis. They just don't really know what is causing this, so maybe we are back to the idiopathic concept. In Sarah's case it wasn't just her platelets that were involved but the reds and whites were also suppressed. The platelets were affected the worst, however.

By the way, I should mention Sarah is not a Celiac, that we know of. I am a Celiac but since she is adopted, she wouldn't be at greater inherited risk for celiac disease, at least not from me.

Have you had marrow analysis done?

Steve

I was diagnosed in early twenties. They did a bone marrow biopsy to rule out leukemia, and they ruled it out. The treatment for ITP which you may know is Prednisone for life or removal of spleen. I started on 100 mg of prednisone a day and went down so that by the end of the month, was on about 5mg per day. It was so awful - the treatment practically worse than the disease. finally, I asked to go off it for a while to see what would happen. I went without symptoms for a few years and then one day it went through the floor (was an immune response to another illness we think) and I ended up in the hospital with only 4,000 platelets. Then I had to get three bags of immune globulin intraveinously (sp?) and stay in bed for three days. Anyway, fine now again. I just keep my eye on it.

not diagnosed but docter thinks i have chrons or ulceritive colitis, im rooting for canidid myself

how old are you bully4u

how old are you dionnek

I am 37 and female. I realize that Bully4You is pretty nondescript...it never dawned on me to use my name, which is Sherri.

[trents]

I was diagnosed in early twenties. They did a bone marrow biopsy to rule out leukemia, and they ruled it out. The treatment for ITP which you may know is Prednisone for life or removal of spleen. I started on 100 mg of prednisone a day and went down so that by the end of the month, was on about 5mg per day. It was so awful - the treatment practically worse than the disease. finally, I asked to go off it for a while to see what would happen. I went without symptoms for a few years and then one day it went through the floor (was an immune response to another illness we think) and I ended up in the hospital with only 4,000 platelets. Then I had to get three bags of immune globulin intraveinously (sp?) and stay in bed for three days. Anyway, fine now again. I just keep my eye on it.

I am 37 and female. I realize that Bully4You is pretty nondescript...it never dawned on me to use my name, which is Sherri.

Sarah's platelet count takes a dive whenever she gets an infection, like strep. We had her on Predinsone for a short while but it gave her gastritis. We quickly discontinued it for fear she might develop a GI bleed. It really had a beneficial effect on her platelet count, however, and seemed to be the beginning of the upward trend.

Have you read of any connection between Celiac disease and ITP?

I really hate to scare anyone, but you can read the bottom below my signature. Just remember that I am 64 years old and was diagnosed very late in life. I guess that is why I want the younger people with newly diagnosed Celiac to realize this is not a game, but a life long diet change.

I have developed mild scoliosis. Is there evidence that there is a connection between Celiac disease and scoliosis? I also have kaiphosis but that runs on my mother's side of the family in both males and females. I am 54 and was diagnosed with Celiac disease about 2 1/2 years ago, the "silent", subclincial form.

Steve

[trents]

Sarah's platelet count takes a dive whenever she gets an infection, like strep. We had her on Predinsone for a short while but it gave her gastritis. We quickly discontinued it for fear she might develop a GI bleed. It really had a beneficial effect on her platelet count, however, and seemed to be the beginning of the upward trend.

Have you read of any connection between Celiac disease and ITP?

I have developed mild scoliosis. Is there evidence that there is a connection between Celiac disease and scoliosis? I also have kaiphosis but that runs on my mother's side of the family in both males and females. I am 54 and was diagnosed with Celiac disease about 2 1/2 years ago, the "silent", subclincial form.

Steve

Indeed, there certainly may be a connection between kypho-scoliosis and celiac disease. Here's an exerpt from an online article I just found (http://www.shands.org/health/information/article/000233.htm):

Signs and tests:

Typically, most people with celiac disease will have symptoms of malabsorption such as diarrhea. However, some will have bone disease, anemia, or other conditions without diarrhea. Compression fractures of the back, kyphoscoliosis (see scoliosis), or other signs of bone disease may be present. Steatorrhea ("fatty" diarrhea, or stools that can be foul smelling and unusually colored) is common.

[BRUMI1968]

Sarah's platelet count takes a dive whenever she gets an infection, like strep. We had her on Predinsone for a short while but it gave her gastritis. We quickly discontinued it for fear she might develop a GI bleed. It really had a beneficial effect on her platelet count, however, and seemed to be the beginning of the upward trend.

Have you read of any connection between Celiac disease and ITP?

I have developed mild scoliosis. Is there evidence that there is a connection between Celiac disease and scoliosis? I also have kaiphosis but that runs on my mother's side of the family in both males and females. I am 54 and was diagnosed with Celiac disease about 2 1/2 years ago, the "silent", subclincial form.

Steve

I think I read that Celiac contributes to all other autoimmune diseases - if in no other way than in making the body suceptible. ITP is not genetic - they don't know what causes it. My doc thought maybe vaccinations or being on antibiotics a lot as a kid (I had lots of bladder infections).

The reason prednison works is because it shuts down your immune system, so it can't kill you. The problem is, then you can catch all sorts of things. In the case of prednisone, the cure is really quite harmful. When I went off it, I had to have an adrenal gland check to be sure it had started working again; while on it, your adrenal glands shut down, which is why you get stone cold tired at 3pm or so.

It was through diet change that I got over my ITP, or at least that it is in remission. At least so it would seem, since that is all I changed. I guess I also got out of a stressful job and lived for a year w/o working near the sea in Port Townsend, WA...that was great too.

I wish you all the luck with Sarah. I didn't go for the removal of the spleen option, which they pushed on me quite a bit, but it works for many. I just didn't feel it was right to be twenty-something and have folks taking bits of me out for the trash bin. Plus, you become more susceptible to pneumonia and other ickies that are gel-coated. I don't think I ran into any natural ideas for ITP other than low protein diet and avoidance of allergin foods. Oh yeah, vitamin C in large doses seemed to work for some folks I recall.

Anyway, best of luck.

[elye]

Type one diabetes here...and there is a definite connection. Ten to fifteen percent of all diabetics also have celiac disease. Can you believe my endocrinologist, who I have been seeing for twenty-five years, knew NOTHING of this connection??!! I told him to get busy and start running the celiac panel on all his diabetic patients. Doctors........don't get me started.......

[2kids4me]

There is an excellent site about Autoimmunity / the diseases etc at John's Hopkns site:

http://autoimmunity.pathology.jhmi.edu/aboutcenter.cfm

I have a son (11 yr) diabetic/celiac - diabetes diagnosed Sept 2003, celiac confirmed by biopsy Aug 2004. A daughter (13yr) diagnosed hypothyroid age 4, Hypotonia at birth, Aspergers at age 7, Kawasaki June 2003, celiac May 2004, stinging insect allergy diagnosed by RAST test 2005 (after reaction to wasp sting prior). I have insulin dependent diabetes (25 at diagnosis), hypothyroidism, and pernicious anemia. We are refered to as a family with polyendocrine failure because 3 family members are affected with multiple immune mediated diseases.

I also have neuropathy, macular edema / minor bleeds in one eye secondary to having diabetes for 20 years. Premature atrial beats that happen every 4th best when I am tired or stressed.

Hypothyroidism is also commonly associated with celiac and/or diabetes.

[AndreaB]

No one in our family is Celiac that I know of. I am allergic and having my family tested by enterolab for wheat/milk/soy/egg/yeast.

I am curious as to whether anyone here has had a child with Henoch-Schonlein Purpura. They don't know much about it (medical profession). My daughter just got over it and still needs to see a kidney specialist for a few months. She was going through a lot for the 2 1/2 months she had it. Very painful. My older two children have always had a very mild eczema on their cheeks. One of the reasons I'm getting them tested by enterolab. The gal there recommended the stool test over the allergy test. She used to work for an allergist. At least it goes over 4 of the main allergens.

[shai76]

I have eosinophilic esophagitis, which is food allergy AND environmentally induced reflux and swelling of the esophagis from eosinophils (a type of pathogen fighting blood cells) taking residence in my esophagis. I never got to the point yet (knock on wood) where it swelled so bad food wouldn't even fit through, but I have got my reflux medication stuck in there before. Ouch.

Here's a link: Eosinophilic Esophagitis

I also have mutlipe food and environmental allergies, eczema, hives, and asthma.

[debmidge]

My husband's newest development due to a reduced immune system is now he has knee bursitis and has to have his knee bursa (both knees) removed. Both GP and my chiropractor says it's a strong possibility that it's the body attacking itself as he doesn't have an occupation (never did) where he worked on his knees like a plumber or carpenter or carpet installer. We can't figure it out other than to attribute it to immune system -- offshoot of celiac.

The delay of getting a correct diagnosis after almost 3 decades is what is driving his failing health. Perhaps if he was diagnosed much sooner this wouldn't be going on.

This is from years of being told to eat whole grain wheat, oats, etc. for the false IBS/colitis diagnoises he got. Nothing is worse than doing what the doctor says only to find it was the worst thing for you.

As an aside, there was a man featured in the NY Post last week who had Gardner's Syndrome. I don't know too much about it and it is rare and deadly. (no connected to celiac disease)

[amymm]

Anyone else with other autoimmune diseases? I have ITP (Idiopathic Thrombocytopenia Purpura), though I'm currently untreated and just fine. It is when the spleen decides to kill off all your platelets until you bleed to death. Great!

Now I'm thinking having Celiac all my life might've contributed to getting ITP.

I have ITP too. I'm 36 but was diagnosed at age 20 by bone marrow biopsy. I spent years on and off prednisone-crappy stuff, but it does the job. In 1999, I had my worst crash-I went down to 14,000. My hematologist at the time just said, "Let's take that spleen out". I went for it, as I really couldn't stand the thought of being on prednisone again.

Sometimes I regret it, but it has worked. I had to spend two pregnancies on that damn medicine-and I hated it. My third baby I didn't take the stuff. I can certainly understand why someone wouldn't opt for the surgery though. When I had it done, it was done laproscopicly (sp?), so it wasn't so bad.

I have been investigated the Celiac connection since the birth of my 2nd child in 2000. I started having terrible GI issues, along with joint pain, muscle aches, skin problems, and numerous other symptoms. Eventually also diagnosed hypothyroid.

I am going to yet another GI doctor in two weeks to pursue the celiac connection. I have negative blood tests, but DQ2 positive, so I'm hoping they'll take me seriously.

My family history in the autoimmune area is mostly type 1 diabetes on my mom's side. I'm really the only one in this generation that has anything serious. Lucky me!

If you want to talk ITP, let me know. I have years of experience!

Amy, San Jose

[LKelly8]

Celiac and juvenile rheumatoid arthritis - diag. at 18 months and still active 36 years later. (75% of JA cases spontaneously go into remission.)

My mother has celiac and vitiligo.

[mganstin]

Hello, I just wanted to let you know that when I was a child (4 or 5) I got Henoch-Schonlein Purpura. It came shortly after I had pneumonia and had it for about 6 weeks. I am 22 now but I still remember how terrible it felt when I was young, so I can sympathize with your daughter. Since it was so rare, especially then, doctors barely knew anything about it and I don't think my kidneys were ever even mentioned. I hope your daughter recovered well and has no long-term damage as a result. Anyway, I have tested mildly positive for Celiac in the recent past and I'm just wondering if there could be some link to this "allergic purpura" as a sign of what is to come in the future. I hope your daughter doesn't get Celiac D., like I did, but it would be smart for her to be tested for it. If you have any questions please feel free to email me at boysenberry_14@yahoo.com and I will do my best to help if I can.

Sincerely, Meghan Ganstine

No one in our family is Celiac that I know of. I am allergic and having my family tested by enterolab for wheat/milk/soy/egg/yeast.

I am curious as to whether anyone here has had a child with Henoch-Schonlein Purpura. They don't know much about it (medical profession). My daughter just got over it and still needs to see a kidney specialist for a few months. She was going through a lot for the 2 1/2 months she had it. Very painful. My older two children have always had a very mild eczema on their cheeks. One of the reasons I'm getting them tested by enterolab. The gal there recommended the stool test over the allergy test. She used to work for an allergist. At least it goes over 4 of the main allergens.

[loraleena]

Wow someone else with ITP. I was diagnosed last summer with ITP. Platelets went to 84,000, but back up to 121,000. Get tested every 6 months. I also have Interstisial cystitis, Hashimotos hypothyroidism, fibromyalgia and Chronic fatigue that is much better gluten free. Things come and go in cycles. I have been dealing with a IC flare for a few months on and off now. Bleh!

[Ursa Major]

I have Addison's disease (adrenal insufficiency), hypothyroidism, fibromyalgia, chronic fatigue syndrome, asthma as well as celiac disease.

[wowzer]

I take synthroid because I orignally had a goiter. I have asthma. Although not officially diagnosed I believe I have DH. I've had way to many rashes diagnosed as many other things over my life. I do have a little sister that is a diagnosed celiac.

[silent-stanger]

I have a few things wrong with me but I like to keep them private for personal reasons. I guess self help is one of the most important things in dealing with these issues. I also think having the support of friends and family who help me through alot of things is really important. They may not always understand and they can't feel what we feel but the important thing as that they are there for us. Illness can be a big part of our lives but we still need to live and enjoy ourselves.... You can try your best to make the most of life, regardless of the obstacles that illness puts in your way. I think Jane Tomlinson's example of making the most out of life is something we can all look at and get some inspiration and hope from.

~SS

[Ms. Skinny Chic]

Hello, I just wanted to let you know that when I was a child (4 or 5) I got Henoch-Schonlein Purpura. It came shortly after I had pneumonia and had it for about 6 weeks. I am 22 now but I still remember how terrible it felt when I was young, so I can sympathize with your daughter. Since it was so rare, especially then, doctors barely knew anything about it and I don't think my kidneys were ever even mentioned. I hope your daughter recovered well and has no long-term damage as a result. Anyway, I have tested mildly positive for Celiac in the recent past and I'm just wondering if there could be some link to this "allergic purpura" as a sign of what is to come in the future. I hope your daughter doesn't get Celiac D., like I did, but it would be smart for her to be tested for it. If you have any questions please feel free to email me at boysenberry_14@yahoo.com and I will do my best to help if I can.

Sincerely, Meghan Ganstine

I think that I have Henoch Schonlein purpura too. I have this awful looking purple bruise like patch or splotches on my face. I have had it since, I was a kid. Doctors don't really know how to treat this thing???

I notice the patch gets darker sometimes and other times it fades away slightly.

Until, I can get some sound medical advice. I am depending on dermablend....lol

[Ms. Skinny Chic]

I have ITP too. I'm 36 but was diagnosed at age 20 by bone marrow biopsy. I spent years on and off prednisone-crappy stuff, but it does the job. In 1999, I had my worst crash-I went down to 14,000. My hematologist at the time just said, "Let's take that spleen out". I went for it, as I really couldn't stand the thought of being on prednisone again.

Sometimes I regret it, but it has worked. I had to spend two pregnancies on that damn medicine-and I hated it. My third baby I didn't take the stuff. I can certainly understand why someone wouldn't opt for the surgery though. When I had it done, it was done laproscopicly (sp?), so it wasn't so bad.

I have been investigated the Celiac connection since the birth of my 2nd child in 2000. I started having terrible GI issues, along with joint pain, muscle aches, skin problems, and numerous other symptoms. Eventually also diagnosed hypothyroid.

I am going to yet another GI doctor in two weeks to pursue the celiac connection. I have negative blood tests, but DQ2 positive, so I'm hoping they'll take me seriously.

My family history in the autoimmune area is mostly type 1 diabetes on my mom's side. I'm really the only one in this generation that has anything serious. Lucky me!

If you want to talk ITP, let me know. I have years of experience!

Amy, San Jose

I think that I have Henoch Schonlein purpura or ITP. I have this awful looking purple bruise like patch or splotches on my face. I have had this problem, since I was a kid. Doctors don't really know how to treat this thing???

I notice the patch gets darker sometimes and other times it fades away slightly.

Until, I can get some sound medical advice. I am depending on dermablend....lol

How did you get diagnosed?????

[photobabe42]

Hi there! I'm 29, female, diagnosed almost ten years ago with Ulcerative Colitis that was upgraded to Crohn's Disease and now my GI says that it's still Crohn's based on the biopsies for grannuloma but mostly it's in my colon. My dad has MS and a bunch of GI problems that he won't get checked out. Actually that's true of some others in the extended family too. I've been tested twice for Celiac and been negative both times but I have many of the symptoms and have started Gluten-free Casein-free diet. Doing better with the gluten-free than that CF I'm going to hassle my GI at my next appointment for further allergy testing. I'll send my poo and blood anywhere, I just want some answers and less gas!

Thanks everyone for everything you post. I think I'm getting some answers finally!