4 replies to this topic

[flboysmom]

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 . 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!

[darlindeb25]

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

[pixiegirl]

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

[flboysmom]

Thank you for the suggestions ! 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.