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duckface2 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)Possible Crohn's Or Refractory?I would really appreciate any insight that anyone out there might have for me. Anything at all would be so helpful at this point.
Okay here we go from the beginning.
A year ago I had mono, strep throat 3 times and an absese in my throat. I took antibiotics for the strep throat each time, and then had to undergo IV anti-biotics for my absese every 8 hours for 4 days. The IV antibiotics did not work so I ended up having to get my tonsil drained and undergo some more antibiotics. I couldn't swallow at that point and would have done anything to get rid of the horrible pain. I began taking Probiotics which helped clear up yeast infections that I had from the anti-biotics. After doing this treatment I was diagnosed with mono a week later. At about this time I started having explosive diarrhea and a lot of gas. I couldn't leave my room because it would hit me so fast and I would be stuck in the washroom for hours. I thought it was an effect of the antibiotics so I went on the BRAT (banana, rice, applesauce, and toast) diet and only ate soups for a couple weeks. My diarrhea seemed to clear up eventually and I began to feel better again, despite continued gas.
Spring and Summer:
I felt better for 3 months eating whatever I wanted, then my bowel movements started changing, I would get really bloated after meals and I would have to use the washroom multiple times a day. My stools became very loose and towards the end of the summer I started to think I was lactose intolerant. (Sorry to go into such detail), but everything was very foul smelling, and there was so much bloating and gas. I also had a lot of yeast infections during this time. I was working at the old spaghetti factory eating a lot of pasta and working at a bookstore and drinking a lot of lattes.
I returned to school in the fall and consulted with my doctor who suggested I try and eliminate lactose. I noticed minor improvements in the first week but then all my symptoms came back. I eliminated all dairy, and nothing changed. Diahrrea, gas, bloating still persisted. I had Strep Throat again, and went on some more anti-biotics for that, then consulted with another doctor who ordered some bloodwork and suggested I be tested for celiac. My TTG came back positive for celiac so I eliminated all gluten from my diet. I noticed some improvements in the first week but my symptoms continued, the diahrrea was less frequent but there was still so much trapped gas and bloating. I was anal about going gluten free, with personal hygiene products, ingredients etc. There was no gluten getting into my system, I've read all of the recommendations to avoid cross contamination etc and was soooo careful. I was eating gluten free baking products and started noticing that after eating them I was bloated too. Basically after anything I would become bloated and gassy. I had several yeast infections throughout this time and could not find a gluten and dairy probiotic to take. The only medication I took throughout this time was Yasmin birth control.
I realized that my symptoms were not getting better and my yeast infections were not going away either so I consulted with another doctor who recommended I try an anti- intestinal spasm pill, Dicetel I believe it was called. I tried this pill and it gave my horrible diahrrea, so I discontinued it's use. I managed to find a gluten and dairy free probiotic in small town nova scotia finally and taking 4 a day my yeast infections cleared up. My doctor recommended I see a naturopath to seek help, so I did. I tried a brown rice diet, (minus yeast, citrus, red meat, refined sugar, dairy and a few other things as well) which gave me horrible pain in my stomach and would make me bedridden for hours. The pain was excruciating just eating a piece of fish, rice and carrots even. I had to use a hotpack to make it feel any better. I was unable to attend classes because I couldn't leave because of the pain. After hours of intense pain I would have to make myself throw up to relieve the pain. There was so much trapped gas that would come up when I was throwing up. A doctor perscribed me lostec antacids, and another antacid, one of which I had an allergic reaction to and my face swelled up. (I'd checked the meds and they were both gluten free). I discontinued the meds and stuck to organic vegetable soups with little bits of meat which seemed to not give me the excrucaiting pain (still lots of bloating and gas). The naturopath had me taking all gluten and dairy free supplements as well B12, adrenal support, and digestive enzymes. I was told to discontinue the pills and was told to do the specific carbohydrate diet. I had a small spot of what my doctor thought was impetego located on my back the size of a dime. I used a cream for this spot.
I eliminated all the required food items of the diet, and did not cheat at all. (I just want to feel better and would follow any diet that would make me feel better). I ate only cooked vegetables, cooked fruit and meat. I eliminated all yeast, sugar, carbs, nuts, dairy, soy, grains etc.) I tried accupuncture treatments, 3 rounds but saw no improvement. The accupuncture was to give me energy, but when you are malnourished there's no point. I could only seem to tolerate soups for a while but eventually worked my way up to some fruit and vegetables. I tried nuts and black bananas (Both gave me diahrrea and horrible excruciating pain.) By this point I had lost 13 pounds, was very malnourished and could not function any more. I had to leave school and return to Ontario as I could not get in with a specialist out east.
I came home and my mom got me going on Vega meal replacement, it seemed to help for a while, but it has Xanthan GUm and Chicory root so I am scared to use it. Benefiber in Canada is gluten-free and made from Chicory root. I was fluctuating between constipated and diahrrea, so I tried benefiber which gave me horrible diahrrea. A few days later I broke out in a terribly itchy skin rash, which my specialist thought was dermatitis herpeformis.I ditched the supplement and went back to the specific carbohydrate diet, and it seemed to help for a while but my symptoms of pain, cramping, diarhea, bloating, gas and constipation kept coming back for seemingly no reason. Foods that I have eaten without problem in the past seem to make me feel pain like squash even. I went in and had an endoscope done on April 1st, and my doctor thought I might have refractory celiac. I went back for the results this week, and I am anemic, my biopsies of my duodenum came back normal, and another Celiac test I scored only an 8, where people with celiacs score in the hundreds. The Doctor thinks I may have Crohn's now, but thinks I could also have Refractory Celiacs. If i had Refractory Celiacs, though would my villi not still be damaged? I mean I've been gluten free since October and soooo careful about it haven't eaten out or anything. I don't know what to think, my specialist also said that people who have Crohn's don't have Celiacs too. I guess there'e nothing I can do now but I just wanted to know if anyone out there has had this experience or one similar to it? I would appreciate any help at all. Or any insights things I should ask my doctor anything really!
I'm Supposed to have a colonoscopy done on Wednesday to see if I have Crohn's. So maybe I'll have a better idea then but I would really be so grateful for anything from this group.
P.S. this is my first post soo if you need to know anything else let me know!
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