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Back From Ct

2 posts in this topic

We were in Danbury, CT all last week visiting my FIL. Overall the trip was really good and we had a nice visit with my FIL and his wife. We went to Mystic Seaport and had a great time and we couldn't have asked for better weather that day. It was beautiful out. My hubby had misunderstood his dad's directions and we were headed to Boston before we realized we had missed our exit. Hubby was ticked but later we laughed about it. The rest of the time we spent visiting, swimming and hanging out in the hot tub. Friday morning we had to move rooms abruptly because water started pouring out of the celing over our bed. Someone above us plugged the toilet and it was overflowing. When we checked out on Sunday we noticed we didn't get charged for the last two days! On the way home we got side swiped by another car on the interstate. It scared the kids and myself, but everyone was fine. The other car pulled off behind us after the accident. They were nice people and were concerned. There was hardly any damage to our car(some scuffed paint), so my husband told the other people he didn't want to report the accident. They were happy with that and we went on our way.

Whenever we travel we always pack food and a cooler. We also stayed in a suite with a kitchenette so that was a huge plus. I couldn't believe the availability of products in that area. If you can imagine it, you almost certainly can find it. I went to the local Trader Joes. Honestly, I wasn't all that impressed. What I did find to be the most awesome place was a store called Stew Leonards!! OMG, I could spend all day in that place!

The boys and I survived my inlaws place without getting glutened. However, all three of us got zapped at a restaurant in Mystic on Wed. night. It wasn't to bad of a reaction for us luckily. Nothing a few zantac and gas ex didn't help. I'm still not quite right but at least I didn't get hit with major D. Youngest boy had a belly ache and oldest boy was had a lot of gas pain and bloating. Friday night my oldest boy broke out in hives head to toe. We battled the hives till we got home last night. I broke down and took him to the ED because he was so miserable. He got an epi shot and steriods and was sent home with a RX for steroids to take for the next 4 days. I checked with the allergist this morning and said there wasn't anymore he could do at this point, but to check in next Monday and we would go from there. I'm not sure if it is one of his diagnosed allergies causing a flare or something he ate. To our knowledge he doesn't have any food allergies.

So overall we had a great time even with all the mishaps. They make for a more memorable time. :lol: :lol:


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I'm heading to Mystic next week - can you tell me where you got glutened?? Thanks!


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    • Thank you for going through my long post and responding. I have been both dairy and gluten-free free for 10 months now. Yes, even I was worried about other food allergies. I mentioned it to my GI doc and asked if I need food allergy test to eliminate other allergens. He said, food allergy tests give a lot of false positives and are not accurate. He said: not everything is because of food allergy and it's refractory celiac which is causing issues as the jejunum biopsy, done recently, is showing villous flattening.

      My doubt: 1. If I have so much damage in my small intestine (villous flattening) then how was I keeping fine for 6-7 months ( eating eggs, soy, rice and meat) - was constantly losing weight though - but was able to work out regularly - not much fatigue. 2. If it is other food allergens ( out of mentioned allergens, I take eggs, soy chunks, almonds only) why does it happen only few times and not always - I keep well for 7-8 days and then fall sick again - this without any change in diet.  
    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
    • What if it were something else that glutened you?  Maybe you ate too much of a good thing?  I once (three months post dx) ate too much gluten-free fried chicken, vomited, passed out and fractured my back (osteoporosis) in the process.  Paramedics, ER doc and Cardio all thought I was having a heart attack.   No.  It was sheer gluttony and bad bones.  Not good to overload with a damaged gut.    Maybe you did get some contaminated nuts.  Afterall, anything processed is suspect.  What might be well tolerated by some, might be too much for others.  We all have our various levels of gluten intolerance.   The old 20 parts per million is just a guideline, but science does not really know (lack of funding......doe anyone really care enough to find out?)  My hubby has been gluten-free for 15 years.  When I was first diagnosed, I tried to eat the gluten-free foods that I normally gave him.   Problem was he was healed and I was not.  Things like Xanthan Gum in commercial processed gluten-free breads make me feel like I have been glutened, but it is just (and still is) an intolerance.  So no bread for me unless I make it myself using a different gum.   Too lazy, so I do without.   so, ask your doctor if you really want to know or lay off the cashews and test them again in a month using a certified gluten-free nut.  I wish this was easier!    
    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
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