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Anyone With An Unsupportive Spouse / Family Members / Friends?


Menqet

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Chaff Explorer

I've just been so fatigued lately, and it's so hard to even think straight. It's even affecting my speech. I've always had a little bit of a stammer, but now I sometimes struggle to even come up with the word I want to say. I just draw a blank!

This hits the nail on the head for me -- that's exactly what I went through for most of my life, like clockwork, every afternoon.

Anyway, I think the board tends to act protectively of disrespected celiacs, which is very sweet of everyone, but a little tricky when it's about someone you love. I hope your husband has started to learn a little bit about this disease and see how serious it is since you first posted. It does sound ridiculous the first time you hear of it. I know I've jumped on a lot of quick-fix solutions in my search to not feel sick all the time, and my husband considered most of the ludicrous, and they were. (Like, the kitchen looked like a science lab sometimes.) But he caught on that this was different, probably because he's type 1 diabetic and knows how serious autoimmune stuff is. Without that experience, it can take a little while to get on board.

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AVR1962 Collaborator

I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

There's a variety of things that can cause ringing in the ears and not everyone is the same. Mine finally went away when I went off all grains and sugar. I currently allow a little grain and a little sugar but I have to be very careful or the ringing comes back.

It is not always easy not getting support especially from a spouse. When I was first diagnosed it was not by tests, it was by a doc who decided to call it celiac based on symptoms, going off wheat and then going back on and getting terribly sick. So husband would tell people "we weren't sure it was celiac, that maybe my system just needs time to heal."

After reading so much about how bad wheat is for you I convinced my teen daughter to go off and my husband even gave it a try. My daughter noticed a difference, said she felt so much better. Husband said it made no difference to him and went back to his gluten stuffing. I still have a hard time watching him fill his mouth and plate with gluten as I truly it is bad for people in general.

I used to tell everyone my story and I used to hard about wheat but I have finally gave up, people don't want to hear it, they don't want to try it and they don't think it applies to them. One of my last straws was with my husband not that long ago. He said, "I am sure glad I don't have issues with wheat." I didn't do well with that statement. I really don't think he gave a real good honest try so how would he know and that was the last for me to talk about gluten.

My friends have been great, my daughters wonderful.

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love2travel Mentor

My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.

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DavinaRN Explorer

Listen to your body, first. Now as to the hubby...mine was so unsupportive in the beginning (yours sounds like mine) but the longer I stayed gluten free, the more he cared (guess he realized how sick it made me when I had no trouble passing up my favorites and he started researching cross contamination and telling me about). Fully supportive now, although he says he would never let his body win like that. I just said it must not make you sick enough. Extremely supportive since anaphylactic reaction (testing for allergy Jan11, had neg celiac blood panel before going gluten free) Wednesday and ending up in ER unable to breath when reaction started the normal gluten exposure way.

So long story, short. Give him time, hold your ground and follow what the doctor and your body tells you. No one has to give permission for gluten free lifestyle except you.

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Ollie's Mom Apprentice

My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.

Awwww he sounds just like my hubby. I don't know what I'd do if he wasn't supportive.

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love2travel Mentor

Awwww he sounds just like my hubby. I don't know what I'd do if he wasn't supportive.

That's so great to hear. It certainly makes things easier to bear and deal with! :wub:

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IrishHeart Veteran

hi Guys.

Just so you know--

the original poster, Menquet

has not been active on the board since July 2011

and may not see your responses to her.

But you can still talk with each other, of course. :)

Just wanted you to know (in case she does not reply to your helpful responses).

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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
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