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About JenHarris

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  1. Weird thing is, just after writing the above post I started chilling and running fever. Ran fever (little over 100) for about 16 hours, couldn't eat, and then fever was gone. Woke up yesterday morning feeling better except for a headache and my stomach's still very very sensitive, and I had a round of extremely loose stool yesterday too. Stomach is still sensitive today. I am starting to think the fever may have been gluten related??? Can super sensitive gluten intolerant patients run fever with being glutened? As of right now I've only been diagnosed Gluten Intolerant. My initial round of Celiac testing came back negative (including biopsies, but only 2 were done). I was not happy with the first doc at all and went to a new GI doc. My new doctor says I wasn't on a proper gluten challenge and the right blood tests weren't done to be completely conclusive. He wants to redo all of the testing (including biopsies- getting 7 this time) and go ahead with the genetic test. I'm not starting that all until this fall. By the way.... I hadn't been out of the house to be exposed to anyone in the previous 72 hours, and I had not been around anyone who was sick at all in the past 2 weeks that I know of.
  2. Just remember, you can have pretty much all of the outward symptoms of Coeliac (except for DH) and be gluten intolerant/sensitive. Me and my son both have symptoms and I'm going to go through my second round of testing later this year because according to my new doctor, the testing I had two months ago wasn't done right and therefore can't be deemed conclusive, so I encourage you to make sure they are doing the right testing on you. And you might see if they will do genetic testing as well.
  3. I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.) I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him. I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge. Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.
  4. Oh, I know that going gluten-free will solve it... it's just that I'd really like to have a firm diagnosis for tax purposes so we can write off some of the food cost, and for my piece of mind after years of unexplained symptoms. My son has Cystic Fibrosis and Short Bowel Syndrome so we pay through the nose for his medical expenses (just for meds and regular doctor visits on a good month, we pay $300- and that's with insurance... on a bad month, we can pay $600 or more). And the fact that my son seems to be gluten sensitive too means we will be transitioning to a gluten-free household so I can prevent cross contamination. Eventually I'll be getting rid of all of our wheat-based flours and getting rid of all of our pasta and bread that is not gluten free since my husband is the only one left in the household who isn't gluten-sensitive. Thank you for the sympathy/empathy. It does mean a lot to know that there are other people going through the same frustrations.
  5. SO unbelievably frustrated and so mad I could scream right now. My doctor shouldn't even be a doctor!! I had an upper GI done two weeks ago and just found out my 'Baylor and Mayo- accredited' doctor only took 3 biopsies, and now all he wants to do is put me on a year's worth of Omeprazole and apparently call it a day. This is a load of $&*+!!!! I got a one paragraph explanation of findings in the mail (benign biopsy findings), and no explanation of what could be causing my ulcers or esophageal damage, or the bowel inflammation that was found during the scope. And no mention of the need to schedule a follow-up. Is this a joke?! Has anybody else dealt with this? I just don't know what to do anymore. Is it worth pursuing further testing or should I just forget it and stick to going gluten-free?
  6. Thanks. I am back to a gluten free diet today. My reactions have been severe enough that I'm trying to find airtight containers for flours, I have my own peanut butter jar, I don't use butter, or the toaster and I've sorted my cabinets by gluten-free and gluten-y foods. I now suspect my son might be sensitive as well. He starts blood work next week. I'm a little scared if he has it. He has Cystic Fibrosis and Short Bowel Syndrome already and any other damaging diseases to his small bowel could cause major damage beyond the diseases he has already. :-/ Due to the Short Bowel, he already has problems with sugar absorption and can't have more than 5-7 grams of sugar per serving. Somehow he's managing to stay at the 50th percentile for weight, but I really don't know how long that's going to last if he is gluten intolerant or has Celiac. I guess it's good that we'll know now rather than later and hopefully we can prevent damage if he does have celiac.
  7. Yep. Sounds like glutening to me. Just like my 'glutened' symptoms too. Fatigue, headache, brain fog followed by not wanting to get off the couch the next day. Cross contamination has got me from the peanut butter jar just a couple days ago (presumably from stray bread crumbs transferred), so I feel for you. Now we have his and hers peanut butter jars.
  8. I had an upper endoscopy today and had some very interesting findings for someone who is just, 'gluten-intolerant' so I'm actually hoping the biopsies show I'm positive for Celiac despite negative IGA... or at least that it leads to some diagnosis other than 'IBS'. Here's what the official report said and the doctor's comments to me. I had grade A esophagitis (esophageal damage from reflux), gastric mucosal abnormality characterized by erythema (he said there were lots of small ulcerated spots on the lower half of my stomach) and finally, erythematous duodenopathy (inflammation of the small bowel). All of these spots were biopsied. He is very intrigued considering how severe my reactions to gluten seem to be. He has told me I'm one of the most severely reactive 'gluten sensitives' he has seen if I'm not celiac. Results from the biopsies should be back next week. Anybody else have these findings at your endoscopy???
  9. Tonight I accidentally glutened myself with chili beans (which had modified food starch unbeknownst to me), and within 15 minutes of having my meal I had a severe headache and noticed my hands shaking. (This was 45 minutes ago now). No stomach cramping yet, but I'm sure that's coming. The pain is extending all the way down the back of my head and into my neck and my throat is hurting and seems swollen too... Is this an allergic reaction????
  10. Here are the results. He gave me a copy and went over each result with me. tTG IgA: 0 Gliadin IgA: 2 Gliadin IgG: 10 IgA, Total: 305 Vitamin B12: 903.4 He also did a Lipid Panel- which was normal. Amylase and Lipase levels were also normal. Oh, and yes, I have been having pain on right side just below ribs that radiates to the back on occasion, so I'm sure that's why he's testing my gallbladder.
  11. I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free. Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis. He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened. Anybody else had similar experiences to this???
  12. I've been gluten free for most of this week and dairy-free for the last three days. I can't tell you how much better I feel! I was commenting to my husband that this is the first time I can truly say I've gone all day without stomach distress of some type (GERD or IBS-like symptoms). My stomach has been completely content all day. I'm not bloated. I've had tons of energy today, (which is not the norm for me). It's freaking awesome. Now I'm just curious to see what my celiac panel shows. One thing's for certain. No matter what it shows, I'm continuing a Gluten-free lifestyle.
  13. I'm so frustrated. I went in for my lactose intolerance test (hydrogen breath test) and it was nothing like I expected. Everywhere I'd read about procedure, I was supposed to drink 12 oz. of whole milk 3 hours before the test, go in and be given a challenge dose of lactose, the subsequently blow into the breath machine every 15-30 minutes for 3 hours following. I go in, fully expecting to sit for 3 hours for thorough testing. They take me back into the room, the nurse hands me the machine (not even mentioning a challenge dose) and says 'blow'. I blew once. She said I was negative, and that I could go?! WTHeck? Is this common practice now? Or should I go to someone else who will do a more thorough test? The crazy thing is that I was on the verge of throwing up from the milk on my empty stomach and now I'm cramping. Can I just be lactose sensitive without it showing up in this test? All I want at this point is some sort of diagnosis of my problems and I'm just becoming more and more frustrated. How in the world can I have Fibromyalgia, CFS, IBS, GERD, Asthma, and Vitamin deficiencies and it not all be connected somehow medically? I'm sick and tired of doctors saying that it 'must be due to stress'. That is not a good enough answer for me anymore.
  14. Does your daughter have any other issues besides failure to thrive? Does she have frequent lung problems or get sick with head colds a lot? Does she have any known vitamin deficiencies?
  15. I too have had this. And it does happen more with being sick, but I've had it with migraines too. My husband thought it was so weird that I couldn't wear anything but super loose clothing when I used to have migraines.
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