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Sorry my titles so long but its hard to really shorten that. I'm trying to get advice for family planning, I guess. I am 26years old and have two little girls ages 6 and 3. They are both smart and strong but they have both inherited medical issues. My 6 year old especially. She has Celiac, dairy intolerance, some unknown allergy causing eosinophilic esophagitis (inflammation in her esophagus), and it seems she may have Periodic Paralysis like I do (causes temporary weakness/paralysis). She also has asthma related to animal dander. She had to get ear tubes in and her adenoid removed because her ears wouldn't release all the fluid it collected so she couldn't hear properly and her adenoid was swollen and causing problems. Shes been to the doctor way more than average and obviously, that's tough to deal with. My younger daughter is dairy intolerant and the doctor thinks she also has Celiac as well as a fairly benign skin condition called kopilaris pilaris (or something like that, maybe if she guts gluten it will go away*.*). With all of this plus my own conditions, (Hashimoto's Thyroiditis, Celiac, Normokalemic Periodic Paralysis) I'm wondering if I would be doing a disservice to my family and myself as well as any new baby if I were to get pregnant again. Like logically, it seems having a baby knowing all the risks now, would be a bad idea. Tough pregnancy's plus tough recovery's plus baby potentially being born chronically ill; probably shouldn't anymore, right? So logically I know I shouldn't, but I'm having a hard time coping with the idea of never having a baby again. I am a lot healthier than I used to be, but being pregnant has a way of beating up the body so thinking about that has been helpful in preventing me from taking that step. But still, I'm disappointed. I would have liked to have like four kids and as it is it looks like I'll never get the chance to have those twins I always dreamed of:) (I'm a twin so I love:) Has anyone else here had to deal with this? What have you done to cope with it?
1st of all my GI is AMAZING. Not only is he a great doc, but he also is just a great guy. We had a great time, LOL!! The findings were: 1) Hiatal hernia 2) Duodenal tissue looked normal, but he took 10 biopsies to be sure. 3) I may have Eosinophilic Esophagitis, which is an chronic allergic/immune response to a certain food (we don't know what it would be), leading to a buildup of the white blood cells eosiniophils. The evidence was from rings in my esophagus that shouldn't be there. Biopsies were taken to evaluate for that. So now I wait. Only I would add another possibility onto my crazy health situation, LOL!!! He was baffled by my positive TTG celiac blood test, if the biopsy comes back negative. But at least they can see that there is SOMETHING going on in there, and that my body is reacting to something. Now we just to see if it's gluten, or if it's something else. He did recommend a 2 week trial of a gluten free diet to see if it helped alleviate any symptoms.
Hello everyone, (Warning: Extremely Long Post!) I am brand new to the forum and quite the confusing case. My not feeling well all began in late 2009 with extreme brain fog, mild tummy issues, mainly stomach burning and fatigue. I began breaking out in strange rashes off and on and seemed to be having peculiar reactions to food. At first I was so confused and caught off guard because I suddenly became Lactose Intolerant. I couldn't consume dairy without getting stomach cramps, gas and having to run to the bathroom. I seen a GI Dr. and was tested for Celiac back then (around the end of 2009) but it was negative and I have no idea what tests were run, the numbers or reference ranges that came of that test. Dairy continued to make me sick every time I had it. I appeared to react to everything from Dairy to Doughnuts and for some reason all sweets were making me kind of sick, so I thought maybe it was a sugar problem. I went to an alternative doctor and he suggested I go on a Dairy Free and Gluten Free Diet. Which I did - and I felt a lot better but not 100%. I'll admit, at the time I really didn't know a whole lot about Gluten Free diets and I have no idea if I was totally Gluten Free or not, it was a long time ago and I was a newbie. I indulged in quite a bit of supposedly gluten-free processed foods and even still ate oatmeal until oatmeal seemed to also make me sick. Then I removed oatmeal from my diet and still haven't eaten that to this day, I am too worried about it making me sick again. After eating that way for probably 3-4 months I developed an intestinal blockage in February of 2010. The ER Dr. said my intestine twisted shut on itself. I was referred for a Colonoscopy in March of 2010, they did an Endoscopy and Colonoscopy at the same time but were not looking for signs of Celiac specifically. The results were that I have a hiatal hernia and everything else appeared normal. (no biopsies were taken, as they were not looking for Celiac) I fell off the gluten-free Diet but remained Dairy Free almost entirely. I would occasionally consume a bit of dairy to make sure it still made me sick, which it did. So I ate pretty much everything but Dairy till mid 2011 where I went on a very strict, almost Grain Free (it allowed brown rice) - Nut Free, Sugar Free, Still Dairy Free Diet. And I felt really well eating that way because before going on that diet, it seemed like everything made me sick. A bowl of oatmeal, a tuna sandwich, you name it. I had been diagnosed infertile with high likelihood of Endometriosis in 2011 - I had been trying to conceive for two years at that point, so my doctor told me I was infertile. Till 2012 (after 3 years of trying) when I became pregnant! I have no idea how I was able to conceive but I suspect it may have been the diet I was following that helped. And I ate that diet from Mid 2011 till August of 2012 where my 1st trimester pregnancy cravings got the best of me and I began eating pretty much anything. I didn't feel well after going off my diet but I assumed it was just pregnancy stuff. I also discovered that miraculously I was no longer lactose intolerant. Which pretty much brings us to now, I ate whatever I wanted during my pregnancy, had my healthy, perfect son 9 months ago and my health has been going even more down hill since then. I am suffering from Chronic Diarrhea, Nocturnal Diarrhea that wakes me from a dead sleep, not every night but increasing in frequency. I am going as much as 2-8 times a day, most days but not every day. My Lactose intolerance seems to be coming back as I can only occasionally tolerate dairy now. This has been going on for several months and I am losing weight. I am Vitamin D. Deficient again but I was diagnosed Vitamin D Deficient back in 2010 as well, so that is no shock. Brain fog, fatigue, intestinal cramping, tummy pain and most recently Burning sensations, tingling and painful pins and needles in my feet and hands. Cold hands and feet, except when they are hot and burning. Still getting rashes off and on. Which prompted a B12 test that shows a huge decrease from 4 years ago but still good serum levels, no B12 Deficiency. I am having weight loss, unintended of course, my Dr. thinks it is most likely due to the Diarrhea. I have lost over 11 pounds in about 2 months despite having a pretty big appetite and having dessert after every meal and not trying to lose weight. My Dr. ran an IgA test and a TTG-IgA test on January 10th 2014. IgA 188 (Normal is 80-340) So that is normal. TTG-IgA <1.2 (Normal is 0.0-3.9) So that is normal too. I am kind of at a loss, I seriously thought maybe Celiac was the answer for me, since so much seemed to fit. The Nocturnal Diarrhea, the weight loss, even the fact that I was able to go back to eating dairy after the special diet, I thought maybe that was from my Villi Healing and that now I am Lactose Intolerant again because my Villi are getting damaged again.. Even how I was able to conceive after being on my special diet for almost a year but who knows, I'm confused now... any suggestions? There are quite a few Autoimmune Disorders in my family. I have a Sister with Lupus with Kidney Involvement, I have another Sister who has 2 AI's, she has Eosinophilic Esophagitis and Areata Alopecia. My Mother is also sick but hasn't gotten a diagnosis yet and I have a cousin with MS. I am sorry for the long post, thanks for taking the time to read this and any suggestions or comments would be greatly appreciated. Thanks so much! ~ Thursday
HI there, I'm new to this board and I would like to start by saying that I have not been diagnosed with Celiac (neither has it been ruled out). I was referred to this site for the rich resources available about eating gluten free and as a support network with others dealing with the difficulty of living with the daily problems of living with such restrictions. I have, however, been diagnosed with Eosinophilic Esophagitis. Symptoms including, tightening of the airway, dysphagia, choking, gastrointestinal distress. I also had a rash that started around the same time these symptoms began. On and off, I couldn't correlate it to anything. I started with an upper gi. My physician said that if I wanted, before he did a scope, I could try an elimination diet. So for several weeks I went off of dairy, wheat, soy, nuts, seafood and eggs. (and I do mean religiously. I did not 'cheat' and read every package on every thing, nor did I eat out for fear of the unknown) I started adding these back into my diet slowly and watching for response. Everything was added back into my diet without issue. Shortly before I got to the last thing on the list, wheat, I had buckwheat with dinner. I had a reaction. I thought it was supposed to be safe! Then I tried quinoa. same issue. Then teff and millet. Issues there too. I still have yet to try wheat, but I fear the worst. When I was tested for allergy to wheat, it came back clear, but my physician said that I could have an intolerance which isn't the same as an allergy. I have no problem with rice or seeds. My question is, have any of you experienced this sort of issue? I am curious because I thought out of all those things I should be able to find an alternative to wheat. I have been using rice flour and chickpea, but I am having difficulty finding too much on the internet about intolerances or allergies with these grain substitutions. Any ideas or info would be greatly appreciated. Thank you!