• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Whole Family Gluten Free
0

5 posts in this topic

My two sons and I have been gluten free (after diagnosis of celiac disease for one boy and I and gluten intolerance for my other son) for a while now and my husband just got diagnosed w/ celiac disease and so our daughter has to have it also. Anyone else have a family where both parents have been diagnosed and therefore all of your kids have it (celiac disease or gluten intolerance) too ? My husband until a few days ago has been mostly gluten free at home, but has had some while at work. My daughter has had a similar diet, we occasionally packed some foods in her lunch w/ gluten containing foods. Before my husband received his diagnosis a few days ago, my daughter had a piece of cake at church, then went to a birthday party and had pizza. She felt really crappy after the party and decided on her own to go gluten free. She knew we would know soon about her dad but didn't even want to wait, she knew it wasn't good for her to have.

The only symptom she had was reflux (still needs treatment at 7 yrs old) until going mostly gluten free. After her body started healing, she had a noticeable reaction to gluten.

I am wondering if our experience is unique (both parents) or not.

Lorraine

0

Share this post


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


I have a similar situation as yours. Myself and my three children all have different levels of gluten intolerance. Two quite sensitive with bad reactions to gluten accidents and lots of symptoms and two with very few symptoms and very little reaction to a gluten accident. I believe my husband may also be gluten intolerant, but he won't get tested right now. He doesn't want to have to give up his favorite foods! He also doesn't think he has it since he is not as sick as I was. :rolleyes: He does have some symptoms though and I am hoping to get him tested at the Stanford Celiac Conference this fall. He was interested in it when the support group leader mentioned it to him last weekend. I was so surprised, since this was the first time he actually showed interest in learning about the gluten-free diet and testing. He even took the day off work to come with us to the meeting.

Other than the foods he cooks for himself, our household is gluten-free. We are all doing well on the diet and I think my husband would be healthier if he would go on it too.

It is much easier to have the whole house gluten-free!

God bless,

Mariann

0

Share this post


Link to post
Share on other sites

We have a 9 year old son and 4 year old daughter with celiac disease. Our son has been gluten free for 4 weeks and our daughter will be gluten free after this Wednesday. She is scheduled for her biopsy and will be gluten-free starting on Thursday. We are 99% sure she is positive too. My husband is probable celiac and is being referred to a specialist for further testing. If my husband is celiac too, then all four of us will go gluten free.

Mom 2 2 celiac children :D

0

Share this post


Link to post
Share on other sites

Mom22, I wanted to say welcome to the message board. There is a wonderful group of supportive people here. I wouldn't know how I would have been able to make it without them! I hope your daughter's biopsy goes well. It is actually easier to have the whole family gluten-free. Trying to keep 1 or 2 members from getting contaminated by the non--gluten-free foods is a real challenge. I kept getting sick before my family also went gluten-free.

God bless,

Mariann

(mom and 3 kids gluten-free, dairy-free and two of us have problems with soy)

0

Share this post


Link to post
Share on other sites

Mariann,

Thanks for the warm welcome. I have to say that 2004 is a year that I am not going to quickly forget. My husband and I have been to a support group and I have been doing so much research work. I have found that you can gain so much valuable information from others and encouragement, which I so desperately needed. :D

Mom 2 2 celiac children

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
      106,460
    • Total Posts
      930,679
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hey Matt  thanks for your reply fellow Brit! I this is very interesting... I am very sensitive to cross contamination... e.g. A sieve wasn't washed properly when I lived at my mums so when I had drained my gluten-free pasta .. I hadn't even eaten the dish before I started to pass out and go dizzy and hot .. calling for my bf and mum ( they had a great team going when I would have an episode) it's horrendous!  The fatigue is something I imagine every coeliac suffers with! I have to nap a lot.  Ok so the booze I drink most of is -processo -amaretto -vodka, wine, cider (very rarely)  when I drink at home I'm fine!!!  I wonder if it's cross contamination from the bar or the level of alcohol?!  I also had a jäger bomb shot on Friday (looked it up and a lot of people say it's gluten-free)  it's a hard live but someone's got to do it!!  Thanks for the reply!  When you get poorly from gluten (and the other evil candidates) are you so bad you can't function and feel your body is about to snap?  Kind regards  steph 
    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol and a doctor's answer: http://www.steadyhealth.com/medical-answers/abnormal-reactions-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
  • Upcoming Events