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Celiac And Other Auto-immune Diseases
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I think I may have Celiac disease and wanted to share my story in hope for some support and/or advice from those that may have had a similar experience.

I am 30 years old and have been sick with severe stomach issues (bloody diarrhea, nausea, vomiting, bloated, pain, etc) for about 7 years now. About 2 years ago, I had both blood tests and a biopsy to test for Celiac, along with other tests. The blood test came back positive for Celiac, but the biopsy came back negative, so my doctor told me I didn't have it. I was then diagnosed with microscopic and ulcertive colitis. The doctor put me on various medications and my stomach issues seemed to be under control. Then, about a year ago, I developed a bad rash on my face and hands which then led to dehibilitating muscle pain and fatigue. After much frustration and many doctors, I have now been diagnosed with Lupus and Dermatomyositis -- both auto-immune diseases. I know Celiac is also auto-immune and that once you have one, you are predisposed to develop others. I am now on several drugs including methotrexate, which is causing my hair to fall out. At one time I prayed that I didn't have Celiac so I wouldn't have to stick to the difficult diet, but now that I am experiencing all of the horrible side effects from these medications, I am praying that I do so I can come off the medication on get healthy by changing my diet. I have been on the gluten-free diet for about a week now, but still am not even sure if I have Celiac or if it will work. As you all obviously know, it is such a difficult diet, but even more so when you don't even know if you are going to gain the benefits from it. Although I have some of the best doctors in the area, I can't get anyone to give me a definitive answer on whether or not I have Celiace disease. They all just say "Well it can't hurt to try the diet." Easier said than done when it's not your health.

Has anyone had other auto-immune diseases that have been put into remission after going gluten-free? If so, do you know how long before I might start to feel even a little better?

Thank you.

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I can't offer any suggestions for your medical conditions. Sounds like you're having real problems. I can only suggest that before you lose hope and become too overwhelmed, try seeing a different doctor -- I'm amazed at the way there can be so many different interpretations from the same set of symptoms/tests.

My 14-year old son is type I diabetic, hypothyroid, and probably celiac disease. The blood tests came back positive, it's in the family, even the genetic test pointed to predisposition. But biopsy came up negative. Our family is trying to go gluten-free -- 3 months now. But he didn't have the other symptoms you have -- so I don't really know if it's helpful.

I know that gluten-free is a huge hassle (at least at first), but it cartainly won't hurt you medically -- not like some of the medications. If it comes down to "pick your poison", gluten-free is not poisonous. I've heard that after 6 weeks you should feel better.

Stick with it. Stock up on rice, peas, and steak. Pamper yourself in other ways. And don't settle for wishy-washy explanations.

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JCharwood,

Besides celiac disease, I also have Lupus, OA, hypothyroidism, optical seizures, hypoglycemia and Sjogrens. Almost all of these conditions are the result of undiagnosed celiac disease.

I'm sorry to hear about your hair loss. To date, the methotrexate has not had that affect on me. The Plaquenil has affected my eyes, though. Quite light sensitive and have to have the 6 month eye exams.

But, thanks to the drugs and a gluten-free diet, I can usually make it through the day to teach the kids (we homeschool) and my few music students throughout the week.

Hang in there. There are good days and bad days. The former...we forget we are ill. The latter...we sometimes hope to die.

Libby.

AZ

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Hi Sld,

I can relate to some of your symptoms. I was diagnosed with gluten sensitivity/casein sensitive in December of 2002 but prior to that diagnosis I have had hypothyroid since childhood, low progesterone and now adrenal insufficiency and the latest is suspected low testosterone in addition to osteopinea. Now here's the thing, even with my gluten-free diet none of my symptoms have gone into remission.

I do recommend that you get a stool test and gene test through Enterolab. I was diagnosed through that lab. My nutritionist first believed that I had a wheat and dairy allergy. So to double check his seemingly odd diagnosis, I searched out other sources of diagnosis. I found Enterolab, a non-invasive lab, and was tested. Ironically, the tests confirmed my nutritionists suspicions. I do believe that this is a great place for you to start in your search.

May I also suggest that you research and consider other natural supplements for the future health of your bowels. First, Organic Coconut Oil, Bovine Colostrum and Whole leaf Aloe Vera Juice. They are great support until you know exactly what your true diagnosis is, besides they do not have side effects! One of them is bound to bring relief. The aloe brings instant relief to me, but not my husband. I would love to hear how everything works out for you. :D

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Hi

I am new here and I am curious if anyone has Celiac and also developed a blood disorder also auto-immune. I have been diagnosised with LA antibody. It is a lupus antibody that is a clotting disorder. I do not have Lupus the disease that is different. I have also been told that when you have one auto-immune disease you are highly likely to develope another and so not sure which came first. This blood disorder was found by accident during my pre-screening blood tests for surgery. I now have to be on a blood thinner as if not I am high risk to develop a stroke. At first it was thought to have been caused by using Quinnine Sulphate for my nocturnal leg cramps but I have been off now almost a year and still have the clotting disorder so now the theory is that once an auto-immune response is started it does not go away. Such as Celiac once activated it will always be there and one can only hope for control by being strick with diet.

I am having a hard time finding infomation of this combination. I developed a lactose intolerance with the celiac disease and was also told this is common as when the villi in the bowel is gone and is flat the lactose cannot be digested properly so therefore the intolerance. A dietician says once I have good control of the celiac and the bowel heals I may be able to tolerate some lactose again but will have to be well healed for that. I still have trouble with hidden glutten so still get into trouble .

So anyone have this too???? let me know Celiac is not all that simple I see as everyone seems to develope all kinds of different side effects.

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Hi everyone!

I have similar issues. I am currently on Plaquenil for possible lupus and Levoxyl for Hashimoto's Thyroiditis. I also have endometriosis, hypoglycemia, PCOS, and other autoimmune problems. I tend to be anemic and have low platelets. I have ANA antibodies, anti-thyroid antibodies as well as Sjogren's antibodies. Also, I went through 6 years of infertility & miscarriages before finally conceiving and carrying my son to term.

My almost-2-year-old son and I have been gluten-free for 1 1/2 months now and I am seeing dramatic improvements in our health! The weirdest thing is that my body is reshaping itself - like it's firming up. I supposed I could be building muscle? Also, I have reduced my Plaquenil to 1/2 of the dose and I'm feeling better than I have in years. My hair stopped falling out for a while, but suddenly it's back at it again. (Probably due to my goof up mentioned below.) :unsure:

By the way, we are self-diagnosed. My antibody test came back just a hair under positive - but I belive this is because I am on Plaquenil which suppresses antibodies in general. My GP didn't see any point in going further, so I decided to take matters into my own hands. I have seen enough evidence that being gluten-free helps to make a lifetime dietary change. Plus, I goofed one day and ate gluten and had horrible stomach cramps and had symptoms for 2 weeks afterward. Another clue is that autism runs in my family, and there is certainly a link with celiac sprue and developmental disorders.

I personally don't think the diet is that difficult - but I'm not a huge bread and pasta person. I like corn and corn/quinoa pasta. I also like the rice/almond bread I've been buying. We've been eating more organic things and more veggies and meat. I'm weeding out non-gluten-free items such as make up and shampoo. This diet is totally worth it to feel good! The main thing I miss is pizza from the local pizzeria. *sniff* :(

My son is doing very well. He has gained some wieght and has color in his cheeks. His diarrhea is gone - unless he gets gluten at daycare by mistake. His tantrums have disappeared! It's enough proof for me! (Just don't ask me to give up my dairy! lol) :)

Good luck everyone! I think once you fix the celiac issue, the others should improve somewhat. That's what I am experiencing.

Christine

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I also have auto-immune disorders, mostly skin disorders although I do not have DH. But I do I have alopecia areata - which has gotten worse as I get older, eczema, used to have brittle nails pre diagnoses, and generally have very sensitive skin. I was also hyperthyroid as a child but it corrected itself, as it often does in young children - that was only diagnosed after my mother noticed a small bald spot on the back neck area of my hair line (that's also when the alopecia started).

I've been gluten-free for 2 years but it hasn't seemed to help my alopecia, but did clear up mystery neurological issues that couldn't be diagnosed and horrible leg cramps, but that's another story :)

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Hi, I've enjoyed reading everyone's responses to the topic. I was diagnosed with Celiac about 2 months ago and I've been on the gluten-free diet since then. I don't find it hard to stay on - I wasn't eating much bread or pasta. I miss pizza and the ease of going out to eat - but my iron was so low it's good to feel better now. My levels have come up. I take a baggie with dried fruit and nuts in it when I go out in case I get tempted.

My other autoimmune disease is multiple schlerosis. I'm 56 and was dx'd with ms when I was 53. I can talk to people about the celiac - but not the ms. Guess I'm still in denial. I think they both have something to do with each other. I think the celiac kicked in the ms - and I think stress started the celiac. MS has made me weak and the anemia has also made me weak.

The only symptoms for celiac that I had were bloating (I couldn't understand why my stomach was so distended, I'm thin and don't have any diarhrea). My worst symptom is terrible abdominal pain. I get it early in the AM - like 6:00 - and drink water and it goes away. Twice I went to the hospital 'cause the water didn't take it away and it was so bad. I haven't had this since I've been gluten free. Well, that's my story - can anyone relate to this? Jane

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    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
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    • I too have heart palps, flutters, skips whatever you want to call them. Ecg shows nothing. I was told by my doctor it is due to my low iron which is due to celiac. They pretty much went away after being gluten-free. But occasionally do come back. I've actually been having them for the past 3 days. But I was glutened with really severe reaction about a week ago so not sure if its due to that. Or if iron is low right now. I am on supplements but it still goes up and down. I hear you about doctors. It seems if you don't do research yourself or ask questions they don't say or do or test for anything. 
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