MYSTERY SOLVED?

I may have celiac disease. I may never know for sure though. You see, I've lived 30+ years with stomach troubles. When I was a child I was told to remedy it with 'more fibre'. I did that. It didn't take the stomach pain or diarrhea/constipation away. Seventeen years ago - during our first pregnancy - I had severe stomach pains - and diarrhea/constipation. I was told that I had 'IBS'. Irritable Bowel Syndrome. That was it - I shared my symptoms, here was the diagnosis. I was young. I didn't ask for more information. I did research however and it seemed that the doc knew what he was talking about. I had IBS. I changed my eating - which was healthy to start out with, but I stayed away from some foods like regular coffee, hard-skinned vegetables like corn, green peppers etc. That seemed to help. I told myself it was helping. I avoided stress - as much as I could with working full-time and being pregnant. Oh yeh - the pregnancy wasn't going well either - 'attempted miscarriage' I was told. Everything looked fine, but my body wasn't cooperating. It turned out fine - our baby boy was born healthy and sweet. Then a year later I found out I was pregnant again. A surprise - but a good surprise! Then 'it' started again - spotting. It continued. So much for 'watching the stress'!! I miscarried. No, I more than miscarried. I hemorrhaged so badly that when I got to the hospital (doc told us that every woman bleeds a lot during a miscarriage - we didn't think we were any worse than any others who have been through it) I had severe blood loss, very low blood pressure and I was going into shock. They did a D&C on me without any pain killers. I didn't feel a thing. I was too far gone. What I do remember is asking the emergency room doc if I was going to die. He said he didn't know. He had tears in his eyes. I had a peace - I was ready to go, but I was sad since I wasn't ready to leave my husband and 18 month old little boy. They got the bleeding slowed down - recommended a blood transfusion. I said no. This was just after the late '80s blood transfusion scandal where many people were infected with HIV tainted blood. I'm glad I said no. I did have a full D&C the next day to ensure infection would not set in.

Healing took a while - for the first while I couldn't even walk more than 5 steps without having to sit down. I was VERY weak. But through diet I gained strength. My mom came to help me with our little boy. I slept a lot. My mother-in-law helped too. My dear husband was extremely helpful. At first I thought that he didn't care that we'd lost our baby but then I realized that he was just glad that I was okay. The emergency room doctor had taken him aside and told him that I might not live. It wasn't my time to go. I was blessed with more time with my family.

Then two years later - another pregnancy - fifteen years ago - - my stomach troubles got worse. I had diarrhea for the whole pregnancy. I had joint aches and pains. I didn't feel well. Doctor said I might have a parasite infection even though we're on city water and I'd never traveled far from home. Tests came back negative. I wasn't tested for anything else. I cut fibre from grains out of my diet. Even bought that white bread! Didn't eat much of it though. I did have baked potatoes. They didn't cause pain or discomfort. (They don't contain gluten - I learned this later!) Baby girl was born very healthy - late, and big - and sweet too. The joint pain got worse. Terrible joint pain - mostly in my feet/ankles and hands. Swelling too. I thought I had arthritis. I kept it a secret for a while - I was afraid that they'd take my babies away from me since I was having such a tough time looking after them. It was irrational but it was a real possibility in my mind. It was almost impossible to do up baby sleepers. Diaper changes were painful for me. Doctor said it would go away. It did, but about 10 months later. Disappeared as fast as it came. Never figured it out. I still wasn't feeling well - but I thought I was coping. Two years later - another baby girl - another healthy child. And another sweet one. But then again I love babies! There was another miscarriage before she arrived though. I didn't mourn that miscarriage much - I was too relieved that I hadn't hemorrhaged. I kept the portable phone beside me all the time 'just in case'. I bled for 20 weeks with our last baby. But blessed we were!

Fast forward to summer 2005...I've also had exzema for most of my life. Horrible. A friend of mine had a little girl with severe exzema - her homeopathic doctor told her to eliminate wheat from her daughter's diet. That would help the exzema. I thought I'd try that too. What did I have to lose? Within a few days the exzema improved - 100% at first, then about 40%. It's about 60% better most of the time now*. Better than any drug had done for me (I'd avoided those for years since I didn't get much better with them - I don't trust steroids, they scare me).

But the biggest news was the peace in my belly! I was sure that it would come back soon though. It didn't. I began to read up about wheat, gluten, and stomach problems. I found that I felt even better when I eliminated rye, oats, barley and other sources of gluten. I went gluten-free. Now before I go on - I learned later that you should not go GF without being tested for celiac or gluten-intolerance first. However, I was not going back! Long story short, I continued eating GF (which wasn't easy at first) and I waited for the pain to return. It didn't!

I saw my doctor - explained in a long letter the above, and he referred me to a gastroenterologist. Went there - he was very up-to-date on celiac and gluten-intolerance and was able to give me direction. He wasn't upset at me for going GF. He told me that if it helps, it would be 'prudent' for me to continue. He was willing to do the testing. And if I decided to ever do a gluten-challenge (going back on gluten for 12 weeks or more and then being tested again - if it was celiac, it would show gluten antibodies in my blood) he would support me in that - but, once you eliminate gluten, your body will severely react to it when you reintroduce it. And sometimes symptoms don't go away as fast when you eliminate it again. He said that he understood why I wouldn't want to do that though. I'm finally pain free! I feel good! Obviously there is a connection!

I have a lot of symptoms of celiac - but I may never know for sure. Celiac causes damage to the body - some irreversible. I'm very tired. I'm anemic. Have been for a while. Lots of other stuff going on too. Very painful skin lesions. Infertility and miscarriages are a symptom! Joint pain - even arthritis. There may be a family history - my father and paternal grandmother had stomach and bowel 'issues'. Undiagnosed. Both have passed away and I've hit a brick wall trying to find out information from that side of the family.

The blood tests have been done and soon I will have an endoscopy (laparoscopy of the small intestine - camera inserted down the throat to check for celiac lesions - which may have healed already since the offender isn't in my system - and also to biopsy the intestine for further damage - stuff like cancer which can be a result of gluten damage to the body! EEK (Some people find out it's celiac at the time of a cancer diagnosis!). They might find something - they might not.

I'm over the anger about this whole thing. I can't waste any more time feeling bad. It's time to move on. I still have stress. Sometimes lots of it - sometimes less. We have two teenagers and one who is nearing teenagehood. We homeschool. We're busy - who isn't? But I don't have any stomach woes. Is there a connection? I think so! I don't have one stress though - my life is in the Lord's hands - and that's the best place for it to be! I don't need to worry - He is with me. He will guide. He will direct. PTL! I do miss soft bread though. I loved bread. (But not enough to actually eat it now!)

UPDATE:
June 12, 2006

Endoscopy/gastroscopy and gluten testing results:

(1) My intestines are in very good condition - we even saw the photos! (no, I didn't get copies for my scrapbooks). My specialist did many biopsies and he is very confident that the tissue is healthy and cancer-free. This means that either I don't have celiac or that I have celiac that has healed (healing occurs usually within 6 months of being on a gluten-free diet - I am almost at 1 year now). Unfortunately we don't know which situation is the correct one.

(2) My blood work shows that I have Selective IgA deficiency. "There is a genetically determined condition call selective IgA deficiency that occurs in about 0.2 percent of the population and in about 3% of patients with celiac disease. These people do not make IgA antibodies, whether or not they have celiac disease. Since most of the highly specific and sensitive blood tests for celiac disease measure IgA, the tests are measuring a class of antibody that some people cannot ever make." [Celiac Disease: A Hidden Epidemic, by Peter H.R. Green, MD and Rory Jones] This means that my blood work for celiac would not show celiac anyway and therefore any future testing would have to be via endoscopy/gastroscopy.

(3) For definitive testing I could go on a gluten-challenge. This means that I would have to eat gluten for at least 3 months and then go for another endoscopy/gastroscopy and biopsies. Right now I am not willing to try this option simply because I feel good now and I would get quite sick with gluten in my system again (this is why going on a gluten-free diet before celiac testing is not recommended. When you eliminate gluten from your diet, you may react more severely when you reintroduce it to your system). Besides, how to you choose which three months to be sick for?

(4) The specialist gave me a requisition form for DQ2 and DQ8 gene testing. This is a new test which, if it is available in Canada (doc wasn't sure if it was here yet) would tell us if I have the gene that would make it even possible for me to have celiac. If I do not have this gene, then celiac would be an impossibility for me and our future generations via me. We went for blood testing yesterday but the lab was closed already. If the test is not available yet, I will keep the requisition form for the future & keep trying.***

(5) The importance for me to have a positive or negative diagnosis of celiac is that celiac is a genetic disorder that manifests itself in many ways, often not intestinally (it is often symptomless). It often shows up as malignancies and other auto-immune disorders later on in life, after the damage has been done. Therefore my children/family members could have it without knowing it and without knowing that it is causing irreparable damage to their bodies. Since there is a family history of various intestional/bowel/skin problems in my family, and since I have responded so well to a gluten-free diet, this is a very important investigation.

*** Found out that DQ2 and DQ8 gene testing is available at McMaster Hospital in Hamilton however it is only available upon approval by the Mac Tissue Typing department. I have sent this info to my specialist and am waiting to hear back. In the meantime I have found out through more research and from diagnosed celiacs that there are other genes that have been cited as contributors to celiac disease and although the statistics say that they are less than 1%, there are many, many celiacs without DQ2 and DQ8 but other genes such as DQ3. Sooooooooooo... sounds like this gene testing isn't the definitive!

At this stage I am going on the assumption that I either have celiac disease or that I have gluten intolerance since it is obvious that I have a problem with gluten. In the future I hope that gene testing or other testing will tell me and my family what exactly is causing my problems.

I have read that within 5 years of a GF diet, celiacs incidence of cancers and other medical problems become the same as the stats for the general population.

*Summer 2006 - eczema hovers between 80-90% improvement! I hardly bruise any longer, I am not as tired, although this is still a struggle (apparently although I am no longer anemic, I am on the 'low end of the scale'), dry skin sores on my scalp have disappeared (after being there for 12+ years!), I have grown back scalp hair that had fallen out, my nails are strong and they grow fast...& more! Whether this is celiac disease or gluten-intolerance - it is pretty obvious that there is some sort of connection!