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Help! Information Overload!
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Hello there - I do not have Celiac Disease, but suffer from fatigue, anxiety and depression. I have been seeing a naturopath to help deal with these issues. She tested my food sensitivities and I tested positive for gluten sensitivity. She has recommended that I cut gluten from my diet - she said she guarantees that I will feel better. So obviously I am giving it a shot (for 3 months anyway - is that long enough to know?). The problem is that trying to eat gluten free (with a husband and 2 children who are not gluten-free) is making me so anxious. I feel like I'm losing it with all the information out there! I have a couple of questions for those of you who have been doing this for a while.

I understand that celiac's have to be SO careful, but does someone who is only gluten sensitive (with no stomach issues to speak of, besides maybe some gassiness and bloating caused by carb overload) have to be quite so careful???

Is your reaction to gluten relative to how much gluten is ingested? ie. Whole-wheat bagel VS. toast crumb?

I don't have a problem doing my best to eat gluten free for 3 months (and possibly forever) but how careful do I have to be to notice an improvement in how I feel? Do I need my own toaster? Do I need to call the spice company to see if my garlic powder may have been cross-contaminated even though ingredients only say garlic powder? Can I kiss my child after he's eaten a piece of toast?

If I stick to gluten-free food according to ingredients, but kiss my husband after he drinks a beer or use the same toaster as my family, will I still notice a difference in how I feel, or will I ruin my 3 month test by not being careful enough?

Please help!

Thanks so much in advance. I LOVE these forums - learning so much (maybe too much :-P ).

Amy

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Stick to common sense and avoid the gluten you know about. You will notice a difference avoiding gluten ingredients. Is a crumb less bad than a bagel? Of course. Is it OK to eat crumbs? Not necessarily.

Do you call the garlic powder company? I wouldn't. (I cook with fresh garlic anyway because it's so much better. B)) Do you kiss your child after he's eaten toast? Of course. Brush off any crumbs the way you would anyway. I wouldn't kiss hubs after a beer unless he's brushed his teeth. You KNOW you're getting gluten if you do.

If you have one of those vertical toasters there's an awful lot of gluten down in them from the crumbs. You can clean the rack with a toaster oven.

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I felt a difference after just two weeks of avoiding the obvious gluten sources. Then once I talked to someone about the gluten problem, I avoided the less obvious sources and felt an INTENSE difference after about a month. I suffer with head issues before gut issues.

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Thanks so much. That helps. I was worried that if I consumed even the tiniest shred of gluten (unbeknownst to me) that it would sabotage my 3 month "test". I am pleased to know this is not the case. Well, I will do my best!

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Thanks so much. That helps. I was worried that if I consumed even the tiniest shred of gluten (unbeknownst to me) that it would sabotage my 3 month "test". I am pleased to know this is not the case. Well, I will do my best!

Just wondering how you know you don't have celiac. Were you tested? My thought would be that if you truly don't have it or a life-threatening allergy, then you would not need to be as overly cautious.

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Just wondering how you know you don't have celiac. Were you tested? My thought would be that if you truly don't have it or a life-threatening allergy, then you would not need to be as overly cautious.

There are people who are negative on all the tests but still sensitive to traces of gluten. There is no way to know without trying a strict diet.

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Just wondering how you know you don't have celiac. Were you tested? My thought would be that if you truly don't have it or a life-threatening allergy, then you would not need to be as overly cautious.

I don't actually know that I don't have celiac disease, but I have never suffered from major tummy pain. My symptoms are mostly mental (anxiety primarily), joint pain, and I do get bloating and gassiness from carb overload. I never really considered it to be honest. Although I'm not overly concerned with diagnosis. I am trying as hard as I can to be gluten free (without letting it drive me insane - which is what I'm trying to help with in the first place!) and we'll see what happens. Do not all celiacs have tummy issues?

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While digestive sypmtoms are common, not everyone with celiac disease gets them. You can have damage to the intestines but not have symptoms. There are many other symptoms which include skin rash (DH) and headaches.

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I can't say what would be right for you but I can tell you my experience which may or may not help. Before being diagnosed I had no symptoms. I went to the hospital with chest pains one day out of the blue. It was the first time I had them. I had never had problems with stomach pain, gas or diarrhea. The Drs. tested my heart which was fine. They then thought maybe I had GERD and prescribed acid reducing medicine. I was concerned that they were prescribing drugs with pretty severe effects with no real diagnosis so went to another Dr. He ran a battery of tests including for celiac. I came up highly gluten intolerant, just a number or two under celiac. He suggested I eliminate gluten. Nothing else he tested me for came up positive.

What I found was that the less gluten I had the more severe my reaction when I got it. The Dr. said that my body was on constant defense when I was getting gluten but when it was eliminated it relaxed and that was why the reaction got stronger the less I got. My symptoms of being glutened were gas and diarrhea. I now know when I get the very smallest amount of gluten.

At first we tried just eliminating the obvious sources of gluten. This did nothing since even a crumb would cause a reaction. Eventually, over the years I have replaced all my cooking utensils, small appliances and anything that touched food that had a seam in it. I hadn't used my mixer for years and this past Christmas I used it. Although it was perfectly clean I got a reaction. I donated it. Bought a new one and made the same recipe with the same ingredients. No reaction! It really does make a difference to get rid of all traces. My husband is forbidden to bring any gluten in the house. If he eats out and I kiss him hello I get a reaction. My mom eliminated gluten (sensitivity can be inherited) and found she really did much better with out it. She also now reacts to even the smallest amount.

In addition we only purchase gluten free soaps, chapstick, shampoo etc. My house is completely gluten free and I am the better for it. You may try eliminating it for your entire family. It may be affecting your kids and you just don't know it yet.

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
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