Supportive Husband - Can't Talk About Medical Aspect

[JudyLanum]

I've recently discovered that wheat intolerance may be more severe than ever anticipated. I've been gluten free (except for accidental exposures) for 3 weeks now. (The ooops were met with a major stomach bout about 36 hours later.) I'm finding more and more of my long term health issues are symptoms of Celiac Disease. My husband has supported me in so many ways: Joining me in gluten-free diet, asking me to teach him to read labels, agreeing that all glutens in pantry be given away and replaced, shopping with me for gluten free groceries, researching new recipes, ordering a grain mill for our kitchen!

The confusion comes in when I try to discuss health risks, test taking, etc. Ex. I asked him if I should pursue Celiac testing to determine the extent of my needs. I tried to explain that the tests were invasive and that in my limited research there were disagreements in the validity of the tests, which tests were telling, and that many other health factors come into play, therefore the doctors must have a good idea of your entire health in order to intrepret the tests properly. He immediately became angry and didn't know why I'd want to put my body through this for something to unreliable. He simply wanted me to continue gluten free and not entertain the idea of the tests. I tried to explain that if it is in fact a severe wheat allergy, that perhaps in time I could re-introduce grains into my diet. However, Celiac Disease would mean a permanent change, reintroduction would be more severe and damaging as time goes on.

He absolutely couldn't listen to me discussing these items. I don't know how much he heard, he was so defensive about it all. I do know he cares very much for me and is making sacrifices. I just feel I need someone to bounce the realities and the path forward around with, so that I can make informed decisions. I am so grateful for his loving me and protecting our family by immediately supporting my health needs. I just want desperately to be able to have his emotional support through this journey.

I'm sure others have struggled with spouses having trouble accepting this emotionally. I'd be grateful for some insight on how long it might be before he's had enough time to digest this and will be able to discuss the health side of the issues.

Thanks in advance for your feedback,

Judy

[alex11602]

Welcome to the board.

It is entirely possible that he just does not want to see you in pain when you need to do a gluten challenge in order to be tested. For us, my husband absolutely refused to let me do a gluten challenge for testing because he won't let me be put through hell when it won't necessarily give us a definitive answer. I personally think that the fact he is so supportive of you being gluten free should speak volumes about the fact that he just doesn't want you hurt.

I hope that you are able to figure out what works best for you in the situation. Good Luck!

[Jestgar]

I tried to explain that if it is in fact a severe wheat allergy, that perhaps in time I could re-introduce grains into my diet.

This is extremely unlikely anyway. In all probability, whatever your issue with wheat is, you are done with it for life. Additional issues that might arise with celiac disease would be treated as the arose anyway, so there's no compelling reason to have the diagnosis in your medical record.

Why is it important to YOU to pursue a diagnosis? If you could define that, you might be able to explain it to your hubby.

[mushroom]

Hi Judy, and welcome. I am happy for you that you have a spouse who is supportive and willing to eat gluten free with you to make your life easier and safer. There are many on here who would wish for that.

I guess in reading your post I am a little confused, like your partner. I do not understand this statement: I tried to explain that if it is in fact a severe wheat allergy, that perhaps in time I could re-introduce grains into my diet.

There is a big difference between a severe wheat allergy and celiac disease (or non-celiac gluten intolerance). Celiac disease and gluten intolerance are autoimmune responses to gluten, and cause the body to make IgA antibodies which end up attacking the body itself rather than the foreign invaders it perceives to be present. An allergic reaction occurs when the body makes IgE antibodies which can cause the body to go into anaphylactic shock or break out in hives or or other allergy-type symptoms. The body is not attacking itself, it is attacking the actual invader. They are two different reactions and the body handles them through different pathways. An allergic reaction is usually a pretty immediate thing, may even be instantaneous, whereas an intolerance can manifest itself more slowly, such as your 36-hour reaction time. If you were having a severe allergy reaction there would not be this time lag.

Either way, intolerance or allergy, your body is telling you it does not want you to eat wheat, so I do not understand the statement I have highlighted. There normally is no possibility of reintroduction of gluten grains to the diet if you do not tolerate them, through either the IgA response or the IgE response. So unless you need to prove to someone other than yourself just exactly which response is happening in your body, I guess I do not understand your dilemma either. If you believe you are reacting only to wheat and not to gluten, it is very simple to test barley alone by adding it to some safe soup and seeing how you respond. If you get the same reaction as to wheat it would be a gluten reaction, not a wheat reaction. Many celiacs can tolerate all the other non-gluten grains, although there are those of us who do not tolerate even certified gluten-free oats, or corn, or some other grains. These usually have to be trialled on an individual basis But they usually do not cause an IgE or allergy response -- they are additional food sensitivities.

You may be thinking of childhood food allergies that some children can outgrow. Normally, if you develop an allergy to a food as an adult it is not something that can be outgrown or desensitized to.

Perhaps you could clarify your thinking on this issue for us.

ETA: Cross-posted with Jestgar.

[JudyLanum]

Thanks for the warm welcome, and the thoughtful responses! As you well discerned from my post, I am very new to understanding celiac disease, gluten intolerances, and how they differ from allergies. I appreciate your patience and helping me to understand.

Why I would have liked to re-introduce gluten? (Notice, I'm already learning) From my few weeks of reading/learning and eating, I am learning how very difficult it is to keep a gluten-free lifestyle. Our family loves to eat out. Dealing cross-contamination - need I say more. Eating with friends and family - you know the issues that I've yet to endure.

My youngest did have allergies to wheat, eggs, peanuts, dogs and cats. With removing them and slowly re-introducing them, she is now able to tolerate them all. After that experience, I had a hope that I could do the same for myself. I didn't realize that in adulthood that was near impossible. Knowing this lets me know that it's not a realistic idea.

Why did I feel it was important to test for Celiac Disease? I wanted to understand if I was actually causing my body to attack itself, especially since it seems that the consequences seem to be "silent killers" almost. Should this truly be Celiac, it's life-threatening, and not just "something to suffer through". Being miserable, and it truly is, for a period of time is very inconvenient and uncomfortable. Putting your life at risk and the consequences extending past yourself and to your children and spouse is much more severe. It makes a difference if I'm going to be adamant about having a resturaunt live up to the standards needed for a celiac disease in every situation, and have expectations of my family and friends. I feel that I have to ask for a lot due to my allergies already. I don't want to compound the list unnecessarily.

I have read a little about the testing and the IgA and IgE, but just haven't found a way to make sense and help it stick in my mind as to what they mean. I do appreciate you breaking it down. I will keep trying to get it. Is it possible to have issues with both? Where my gluten free journey began was in an effort to minimize my many environmental allergies (Dogs, cats, trees, grasses)... and then seafood along with many medications. Since the list continues to grow, I was hopefully that if I could get my body to get out of hyper-sensitivity, I might be able to overcome some of these allergies in time. My body breaks out in hives often. In the heavy pollen seasons, I'm on two zyrtec a day (Yes, twice the daily dose) and a nasal spray. I carry benadryl cream and pills in my purse, along with hydrocortisone cream. Whenever the hives break out, I start with the hydrocortisone cream, and if needed continue up the ladder. Since going gluten free, I had no break outs for the first week. When I had the accidental ingestion of glutens, my skin broke out, albiet much less severe than in the past. Would that point to the IgE (allergic) reaction?

You've all convinced me, the testing is unneccessary to suffer through. The life-style is permanent. Family, friends, and resturaunts will either have to embrace me as I am, or we'll eat at home.

Thanks again for all of your support and the gracious welcome.

[mushroom]

Yes, it is possible to have both an IgA and an IgE response to wheat. Miserable situation. And people who have other environmental allergies can and do end up being celiac - my hubs is one of them. He has been desensitized for trees and grasses/weeds, also bee stings. Since he went gluten free about the same time he finished his desensitization there is no way of knowing if gluten free has affected his allergic responses. We have discovered that a lot of his hayfever/asthma is in response to wine. Unfortunately, there is no such desensitization process for an IgA reaction although many pray and dream of it and research proceeds - in fact there is vaccination research being done currently in Australia.

I know all too well the freedom one gives up by having to eat gluten free The spontaneity of eating goes out the window, and we have to plan so much. But the alternative to doing that is a lifetime (if we are lucky) of feeling unwell. It does become easier as you get more into it and more used to thinking this way. And believe me, a supportive spouse (from what I have read and experienced) is such a big part of it. Just imagine if your partner did not believe that your response was as serious as you know it is.

Many make a big deal about the difference between celiac and NCGI, but in my mind I don't separate them. I have never been tested, but because of my other autoimmune diseases believe I must be celiac (I have other celiac family members). But it is not like the difference between German and English measles where each disease entity has been studied well. Research is still continuing into NCGI and doctors have only just acknowledged its existence so they really do not understand its full ramifications at present. In a few years we will know more; in the meantime, treat it with care.

Hubs always says we eat better at home than most people eat out, and by not eating out you can afford to eat better at home