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What If Symptoms Get Worse After Going gluten-free?


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#1 Staceyshoe

 
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Posted 20 November 2010 - 07:50 AM

We recently did genetic testing on our kids, and one of my sons has "THE" classic gene combo for celiac--which means that either myself or my husband has it also. We're strongly suspecting my husband because both he and our son have similar symptoms. Their symptoms are somewhat irritating, but really not bad at all. In fact, we never paid much attention until we started reading more about celiac.

My husband and son do NOT want to go gluten-free. If their blood tests come back positive, we are planning to put them both on gluten-free diets. I've been telling them that if they have celiac, they shouldn't have symptoms if they are gluten-free. Well, now I'm here and reading sooooo many posts by people who have much worse symptoms after going gluten-free--sometimes temporary, sometimes permanent, sometimes just after they get a tiny bit of gluten.

Should we still move forward with our plan? What if they go gluten-free and then have big symptoms? I guess I should warn them ahead of time that things may not completely resolve?
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Son (age 4)- severe IgE allergy to peanuts, tree nuts, dairy and mild soy allergy, neg for celiac gene
Son (age 7)- positive for celiac gene, history of digestive problems, IGA deficient, scope on 4/15/11 was negative, failed gluten challenge
My celiac panel was negative
Husband still needs to be tested

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#2 sandsurfgirl

 
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Posted 20 November 2010 - 12:17 PM

If their blood tests are positive then that means that regardless of symptoms they have an autoimmune disease and their body is destroying their small intestines EVERY time they eat gluten. There are many other symptoms that seem unrelated- anxiety attacks, nose bleeds, insomnia, allergy symptoms, asthma attacks, joint pain, dizzy spells.

If they continue to eat gluten and they have celiac they will eventually get worse over time. Some people on here have PERMANENT brain damage due to celiac, a woman has as ostemy bag because her colon exploded, a friend of mine cannot process protein and carries around 60 pounds of fluid from swelling and the doc can't figure out what to do about it. There are people who present like a lupus patient and who present like an MS patient from celiac. There's also someone on here who stumble when she walks from ataxia due to gluten.

So you may need to scare them straight. It's not something you can build a tolerance for or take lightly. My metabolism is shot now and I'm not sure when it will fix itself if ever. I was always nice and thin and then I just started gaining weight and NOTHING i tried worked. I'm talking doing Weight Watchers and working out HARD with a personal trainer, taking professional dance classes, surfing every weekend, doing the Zone diet religiously and my weight would not budge. Now I am slowly losing, but it's slow as molasses no matter how strict I diet, no matter how hard I work out. And I work out very hard. I do the Insanity Program and I dance once a week for 3 hours straight. And I can't get down past a size 14.

The gluten free diet is not bad at all. There is nothing gluteny that I can't make gluten free. Feel free to send me a private message if you want some quick and easy tips. It's a lot to type right now.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#3 Staceyshoe

 
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Posted 20 November 2010 - 01:09 PM

Thank you for that reality check! I know this is the right thing--really I do. I think I just dread their response if all is not roses after going gluten-free. I've been the one pushing for testing, so I feel guilty about taking away something they enjoy. I guess I need to remind myself that it's the right thing to do. Thanks for the support!
  • 0
Son (age 4)- severe IgE allergy to peanuts, tree nuts, dairy and mild soy allergy, neg for celiac gene
Son (age 7)- positive for celiac gene, history of digestive problems, IGA deficient, scope on 4/15/11 was negative, failed gluten challenge
My celiac panel was negative
Husband still needs to be tested

#4 eatmeat4good

 
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Posted 26 November 2010 - 05:09 AM

Thank you for that reality check! I know this is the right thing--really I do. I think I just dread their response if all is not roses after going gluten-free. I've been the one pushing for testing, so I feel guilty about taking away something they enjoy. I guess I need to remind myself that it's the right thing to do. Thanks for the support!


I faced the same question when approaching my 16 year old about going gluten free. He didn't want to. I had been gluten free for a month and wanted him to feel as good as I was starting to feel. I strongly suspected his physical weakness and severe asthma were likely due to Celiac even though Dr.'s kept telling me asthma was not a common symptom of Celiac. On doing some basic reading on vitamin deficiency..it turns out that severe asthma is a symptom of vitamin D deficiency. So now I knew I was on to something. I discussed it with my son but he didn't want to think his mother knew more than the Dr. Why should I give up pizza...just because you had to? After letting him process for a week, I couldn't take it. I bribed him into giving me a week gluten free. He only made it 4 days. The amazing thing is that he felt wonderful almost immediately. Then he ate pizza with friends and got very sick for a whole week. Another incident a week later with him saying "Hey mom? Do poptarts have gluten in them?" But he is on the way now because the gluten announces itself very loudly when he gets it. I don't have to try to "sell" this anymore. I just try to make sure there is lots of food to eat and he doesn't miss the gluten at all except when it comes to eating out. If your family feels better, it will all be worth it. I personally wouldn't warn them about the possibility of not feeling better right away. Just start with the goal of feeling better and deal with things as they come. It is hard enough to start...and may be overwhelming to think it may not work right away....and who knows? Maybe it will work right away! It only took 4 days for my son who has been sick since age 7. I envy you for finding out while your children are so young. My son missed a lot due to asthma. We are a month into this and he is better every day with not one episode of wheezing. Do be sure to supplement vitamins as many symptoms are vitamin deficiency-related...gluten free is one half..the other is vitamins. Wish you all the best..and it can be really fun to enjoy eating gluten free. I concur with above...there is nothing gluteny that you cannot make gluten free.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates




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