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How Can I Be More Supportive Of My Husband?
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He has been gluten-free since January 1 and except for two mishaps during the first week (my fault with ingredients) he hasn't ingested any gluten. He's mainly sticking to meat, veggies, fruit, and rice. I've experimented with the different flours and have had some success in the kitchen, along with a few flops :rolleyes: . Our two sons have also gone gluten-free and their systems seem to be healing more quickly then my husband's has. He's had his symptoms for at least 10 years, it's been a long process with many different physicians and tests. They still would not give him a conclusive diagnosis. The GI said he didn't think it was celiac, our primary dr. said he didn't know enough about celiac to confirm or dismiss it. His blood panel came back positive, his iron levels are elevated (negative hemochromatosis), his thyroid levels were bottom low for one test and normal a month later, elevated liver enzymes (does not drink at all), fatigued all the time, nausea constantly, life long skin rashes on upper arms and thighs, mouth soars, gum issues (has a Rx to help with that)....anyways many other symptoms that lean towards being gluten intolerant. Our sons are both in the 5% for their ages, the oldest has always had stomach problems (runs to the bathroom as soon as he eats), and the second son's symptoms are much like his dad's...down to the exact skin rash in the same area. We researched celiac for several months before making the gluten-free decision and did not have the boys tested. Anyways, after sharing that history I'll get to my main reason for this post. My husband felt great during weeks 2-3, better then he's been in years. Now, since Sunday he has been miserable, extremely irritable, mood swings, sleeping for several hours (10-12/day). The rash has disappeared on his right arm and his legs, it's still slightly faded on his left arm. This is the first time that his arm and legs have been smooth since he can remember. He has not ingested gluten since early on in week 1. We are staying gluten-free, going off is not an option. The boys are gaining weight and are the oldest one's stomach issues have vanished.

I am assuming and have been told that his body is still detoxing and this is normal. What extra things can I do to help him along and about how long would you think this is going to last? I wish that I could get him to join in here and read for himself your stories. I do tell him and read him things when they are relevant to his experiences. It encourages him and gives him the needed justification he has searched for, but it's not the same as being involved and sort of getting to know the group...if that makes any sense to you all.

Well, I'm starting to do my rambling bit and it's late so I'd better hop off of here and get some rest.

Thanks for listening and any extra tips you could share will be received warmly

:) Blessings!

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;) your hubby and sons are very lucky--they have a wonderful woman taking care of them--you are doing great----now, are you sure your hubby isnt getting gluten somehow--it does sound like a reaction or also could be another intolerance that has popped up--that happens to us celiacs too--maybe soy, corn, dairy, eggs--something like that----could be an after shave he is using, a shampoo, soap, lotion---these have to be checked too, anything that can possibly get anywhere near our eyes or mouth---vitamins, any medication--medicines do not follow the same guidelines as foods do--they dont have to list ingreds in the same way----hope i have helped in someway-----you are all doing great for just 1 month-----it may just be toxins still leaving his system too, just as you thought---deb
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I hate to say but from what I've read I think the time it takes to feel better is different for everyone. All our systems are somewhat different, tolerate different things and were damaged to various degrees.

I've had a similar history as your husband, problems for about 10 years, unexplained rashes, no clear diagnoses. I've switched primary care doctors but my old one told me I did have have celiac and to begin eating gluten again (I had gone off it for about 3 weeks at that point and told him how much better I was feeling). I did end up paying for EntroLab genetic testing which came back that I carry to 2 main genes for celiac, so chances are pretty good I have gluten problems. But one doesn't need to do that or spend the money in my opinion... with the symptoms your family has, going gluten-free is the best way so find out.

That being said, I've been gluten-free since about Sept. 2004 and I feel 90% better then I have in years, however I still do have some symptoms and I'm beginning to think that I have developed other food issues too. It seems like when I eat soy I get some problems. So I have just taken the stance that its going to take a long while for me to figure it all out and that it will be an adventure. (my cup is usually half full)

Every time I go back to the basics, chicken, veggies and fruit, virtually all my symptoms go away, so I keep going back to that diet and then trying to add things, if they bother me, I try and avoid them. I know I'll figure it out, eventually.

Also I've been told that we have to expect that if we had symptoms for say.... 10 years, its going to take a while to get it all out of our system. Again from reading posts here, some feel great in a matter of a couple of months, some have taken a year... but for me the 90% better I feel is a godsend. I'm able to live my life so much more normally now.

So all I can say is be very aware as to what other foods seem to bother your family and see if they get better when you eliminate them. It takes time and can be frustrating but you are on the way to better health.

Best, Susan

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Thank you for the suggestions B) ! Whatever the culprit was it has disappeared for now. He was feeling a bit better yesterday and much better today. I think it may have been some Jell-O Pudding that was on a safe list I found...but has modified food starch listed as an ingredient. Isn't that something that's questionable? I didn't realize that he had been eating it when I posted the original message.

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The rules we follow here in Canada is, if it just says 'modified food starch' we assume it's wheat and don't eat it. The product must specify which modified starch it is, such as corn or soy before we use it. Of course I'm sure there are some products that don't specify that may be safe and we are missing out. But I'd rather miss out than be ill. ;)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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