Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Supportive Husband - Can't Talk About Medical Aspect
0

6 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 :D

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,090
    • Total Posts
      920,307
  • Topics

  • Posts

    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
    • No!  Once you fill the tub, if you sit in it for 3 minutes or you stay for 10... It doesn't change the amount or cost of the water.  That's only relevant if you have 3 kids to cycle thru that same water.  Is your hub bathing in the same water after you? Lol  And even if you add some more hot and stay longer....well...it's much cheaper than perscription meds, vodka or a substance that is legal in a few states.     Of course this only pertains to those of use with running water.... If you make your hub haul water from the creek or well and heat it over a fire....
    • Whether it is bona fide dermatitis herpetiformis, or severe eczema or hives or what have you, we all want to know how to stop the incessant itching.  Through all my research, the solution comes down to one thing: a good long soak in the tub-- with baking soda or Epsom salts or some kind of herbal tea, followed by a rub down in thick expensive lotion.  I don't know about you, but I was brought up to "get in, get done get out."  A long soak in the bath was a frivolous luxury, and a waste of time and hot water.  So now I'm having this awful breakout from forgetting to read a label and got wheated.  And every night I've been soaking in a baking soda bath to relieve the itching and aid my recovery.  And it's been hard! (But it's been very helpful too)  It has been hard to reconcile this "frivolous luxury and waste of time" as medically necessary!  Fortunately I've had no judging, and only support from my husband, who has had a similar upbringing.  Does anyone else struggle with this?
    • His son, Eli, had been misdiagnosed with celiac disease, so the family tried some gluten-free foods. After adding quinoa (KEEN-wah) to their diet, ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • HappyMom623

      I have Tangled problem! I want all the things Rapunzel Related....including Flynn Rider 😂 but seriously. I have like 8 shirts I want.
      · 0 replies
    • AprilBeth2013

      RT @MarkDever: “But the work is God’s and we do not fear the final results. ‘The heathen shall be given to His Son for His inheritance,’ .…
      · 0 replies
    • silk

      I have celiac disease and have been gluten-free for almost 10 years.  I am extremely sensitive to gluten, noting that I react within 15 minutes of contact and in fact the doctor suspects that there may also be an actual wheat allergy at play but have never bothered to be tested since I avoid it like the plague!  I am curious to know if anyone else reacts to flax or inulin?  My symptoms with those two are almost identical to gluten so I have to really watch for that in gluten-free breads and baking and recently discovered after the fact that flax was in the juice I was drinking. I know that people with gluten issues can have other problems as well and in fact I also avoid milk products.  Even after 10 years, and although it has become a way of life, it's still frustrating to have to read every ingredient on every label.😞
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,114
    • Most Online
      1,763

    Newest Member
    3boymommy
    Joined