• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Can I Be More Supportive Of My Husband?
0

5 posts in this topic

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!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


;) 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
0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. ;)

0

Share this post


Link to post
Share on other sites
Ads by Google:


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
      107,377
    • Total Posts
      935,763
  • Member Statistics

    • Total Members
      65,068
    • Most Online
      3,093

    Newest Member
    lucytaylor
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks so much, friends!  JMG, I'll try to get hold of that licorice, almost everything I read gives it glowing reviews.  I miss Bertie Bassets licorice (it contains wheat) so it will be nice to have some licorice again.  Thanks Whitepaw for those ideas, I must admit I'm getting rather fed up with my low fat menu but it seems the best way to keep the pain at bay so it is nice to have something else to cook.  I don't know if I have picked up another intolerance, but you could be onto something there.  And I know what you mean icelandgirl, we've been through so many tests and treatments it all becomes a blur!  My doctor isn't expecting to see me again unless things aren't better within the month, but I might bring my gastro appointment forward if needs be. Actually, in the end yesterday didn't go quite as badly as I'd envisaged it would, which makes me think that some of my pain, bloating and nausea are down to the ompremazole - it does warn that can happen on the packet.  When it says 1 in 10 people get these symptoms I always seem to be that 1 in 10!  I don't have any more burning pain or acid reflux (at least yet) but  I'm still losing weight which slightly troubles me.  That said, when I think of how I normally eat I must be down at least 500 calories a day.  JMG will know from another thread that I have a sweet tooth and at the moment the thought of eating a bar of chocolate makes me feel very sick indeed... Oh no - hope that doesn't mean I have developed a chocolate intolerance! I bought some 10g ompremazole tabs yesterday from Boots, having had nothing yesterday, and I've taken one at breakfast time.  So far so good.  I think I might take these for a few days then taper off. Thank you so much guys for accompanying me on what would otherwise be a lonely journey.  
    • Update: I have been taking Chanca Piedra (specifically, Royal Break-Stone, by Whole World Botanicals) on an empty stomach in the morning for the liver-gall bladder and surprisingly my lips are almost normal. I know the peeling lips may be caused by different issues but I hope this info helps someone.
    • Hi Cristiana, I'm so sorry that you are still not feeling well.  When do you go back to your Dr? I wish I could help more, but it's so hard to know what was what when I was on the PPI.  I was diagnosed with celiac and h. Pylori on the same day so I was already feeling awful.  Then I was put on 2 antibiotics with the  PPI.  I do remember feeling terribly nauseous, but just assumed it was the antibiotics.  When I started tapering, I still wasn't feeling well.  It really took months before I started to feel decent.  But I assume that it was the celiac. I really hope you start to see some improvement...((((hugs))))
    • @scorpio it has now been almost 2 years and I am curious if you ever found something that worked for you. My boyfriend suffers from EC as well and I am desperate to find a resolution for his sake. He's been dealing with it for over a year now and it is taking a toll on his work and social life.   Any updates would be helpful
    • I am going through the diagnosis stage as well. My family has strong history for celiac disease, and while I always had discomfort and other symptoms ( some of which i didnt know about) I wasn't tested until recently because I was DEATHLY afraid of needles. The results are highly positive but I am still getting a biopsy in early August. From what I have learned about it is that the endoscopy is beneficial to looking for not only signs of celiac but also other diseases that have similar symptoms to celiac. Because of your mixed result it wouldn't hurt to get a biopsy but it really is personal preference. I understand what you are going through and didn't like the idea much either but I really think it is something that can help you in the long run. P.S. There are lots of testing being done for new medications or other ways to "cure" celiac other than a gluten-free diet. It is my understanding that this can only be covered by insurance with a confirmed diagnosis (biopsy) but I don't need to get into that. The bottom line is that a biopsy is confirmatory especially since the doctors could see in the intestine, so to me, I feel better knowing that there's no chance of going gluten-free for nothing.
  • Upcoming Events