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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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Hello! I am 48 (almost 49 yrs old) and was diagnosed 3 years ago and remained in denial and then partial denial that it would go away. Well, it did not go away and the reactions are very disturbing. If I get wheat my lungs shut down completely. I was recently diagnosed Hypothyroid. I almost died twice as an infant and had growth problems. So, I was undiagnosed or misdiagnosed for 46 years of my life. :(

I decided to make my son some pumpkin/chocolate chip bars to take back to college today. Working with the flour made the sharp pain in my head come back and the allergy triggers start. It is so hard to cook for yourself and keep your family on a regular diet. I do not feel like it is fair to them to change them to gluten free. My son plays college football and I do not want him sick by drastically changing his diet. (suspicious that he is wheat intolerant) so what do you all do??????

Thank you!!!!

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Welcome!

Being diagnosed w/ celiac when my most favorite thing to do was to bake beautiful, crusty, country loaves of bread wasn't fair either... but it is what it is.

If your son is at all wheat intolerant, it's not only fair to offer a gluten free diet but it might make him feel so much better.

I don't know what to tell you about your symptoms using gluten ingredients. If it makes you sick then you shouldn't do it. Teach the gluten eaters how to cook maybe?

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I made my family go gluten-free. It was too much worry for me to keep bread and flour in the house. Plus i believe that the wheat we consume today is not good for them anyways.

There are a lot of gluten-free baking books and recipes out there that make really nice products. Even my pickiest eaters (elementary aged boys) are slowly coming around. My husband is also picky, but we do more corn, potatoes, and rice; and I always make leftovers so he can have warm lunches... he has barely noticed the difference... or he is being a good husband and not complaining. :) LOL

Good luck!

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"Well, it did not go away and the reactions are very disturbing. If I get wheat my lungs shut down completely."

Bad news:

I don't think you really have a choice. If you are having reactions like that, you could die! It can't be worth it.

Good news:

You can still bake yummy cookies for your son. There are many gluten free recipes on the internet. You don't even have to tell them they are gluten free.

I have mild reactions to airborne grains. I can tell you if and when it is in the room, but please don't try me. My family started off 5 months back totally unwilling, but they are starting to come around as they see what it does for us when I eat gluten free.

I hope all of the same for you-and safety. I am sure you can find food all parties will enjoy.

Diana

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Welcome - it is really hard when it comes to family. But one of the factors in developing coeliac disease is genetic predispostion + a gluten filled diet. If your son has only a wheat intolerance now, by limiting his wheat intake you could actually prevent him from getting full blown coeliac disease. I'm speaking from personal experience - my mum looked after my wheat intolerance so well, baked everything from scratch long before gluten-free foods were available. But as soon as I was left to my own devices, I took the easy, wheat filled road. Now I have coeliac with a beautiful DH rash in everyplace you could imagine. And so now I'm also in the process of having to think about my own children...

It may be more fair to limit his gluten than to cook it for him. It is hard at first...but when you need help, come here. Lots of us to support. Plenty of recipes available on the net. Best wishes to all of you

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Would son rather have a healthy, living mom, or wheat filled goodies? I am guessing the former. And football or not, if he is celiac too, (which is likely) he needs to stop eating it. Unless you wish to explain to him down the road as to why his football career meant more than intestinal cancer.

Once you commit, and get over the hump, it isn't really a hardship except when eating out. Then its a pain. But at home, our whole house is gluten-free so the kids and I can be safe. And we eat very well. I make lovely muffins and cakes and cookies and breads that no one would know are gluten free. It takes more time, and there is a learning curve, but life is so much better now. Give yourself the chance to experience that.

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Hi Jasmine

Welcome to the forum! Hope we can all be of help.

From the sounds of it, you should definitely not be handling wheat flour, or preparing any gluteny foods for other people.

If your son or other family members want something you can't eat, ask them to make it themselves (which is a great chance to teach your son to cook and bake!) If they're baking in the house, it's probably better if you aren't in the kitchen at the time, and make sure everything is cleaned properly, they use different pans, etc.

Co-existing with gluten-eaters is possible, but you have to be careful: you need a separate toaster, cutting boards, pans... anything that gluten could be stuck to, you shouldn't be using.

So, if they don't want to cook for themselves, then they'll just have to eat gluten-free. (And your son should definitely get tested if he hasn't already).

Also, you can probably alter your baking recipes to be gluten-free as well, and just as tasty.

Good luck!

Peg

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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