Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


This topic is now archived and is closed to further replies.

Jerri Ward

Do You Know Where You

Recommended Posts

Do you Know Where You Got Celiac Diease From?

My brother was diagnosed one month before I was. He had been having the big D for 2 yrs. before he went to the dr. I had been having all kinds of problems and had been to different drs. for about 7 mths. before being diagnosed. There is no one on my dads side of the family who has ever heard of it, so I am assuming that means that it did not come from his side of the family. There is no one alive on my mothers side of the family so there is no way of finding out if that is where it originated from. I am 47 and my brother is 44. He has 2 girls who are 7 and 10. I have been completely gluten-free for 1 yr. My brother cheats really bad all of the time. He doesn't see any harm in it. He doesn't see any need in having the girls tested. I am just praying that neither of them have Celiec, because I would not wish it on my worst enemy. For one thing they do not see a good example in their dad and it would be hard for them to stick to a gluten-free diet. After a yr. of being gluten-free, I can honestly say that I do not feel any better than I did when I started. I understand that it takes a while. I just wish it would hurry up.


Celiac Diseac

Sjogren's Syndrome



Hashismoto's Thyroiditis


Raynauds Syndrome


Major Depression

Bipolar Disordor

Neurogenic Bldder

Pudendal Neuralgia

Chronic Insomnia



Vitamin D Deficiency

B12 Defiency Defiency

Iron Defiency

Share this post

Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


You don't feel any better? Have you looked into other food intolerances? Would you mind sharing so people can try and help you troubleshoot? Did you have high malabsorption and vitamin deficiencies that have taken time to heal and get levels back up with. I think the poster Nini has stated it took her two years to completely feel better but I would think there would be progress of feeling better along the way.


Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)

The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post

Link to post
Share on other sites


I can appreciate you wondering where you got coelaic from, I do the same thing. My father was tested and that came back negative, but the doctor would not test my mother as he did not think she had any symptoms. It is not as though they do not know what it is, as my father's sister in law has coeliac.

I can't say for sure, but I think it was from my mother's side it comes from, as she has had stomach problems on and of for years, and had always been tired, but without any testing how will I know? Do I really need to know where it came from so that I can blame someone? Not that I will blame them, but then I won't feel like the only one in my family with it, but I wouldn't like anybody else to have this. Maybe their ignorance is bliss for them, afterall they are well into their seventies. And the other frustrating thing is none of my brothers and sisters are willing to get tested. So I is all alone in this.

I am about your age, 49 and I must admit it has taken time to get to here, after nearly one year of being gluten free. Along the way I have discovered other food issues, and have eliminated them and I think I am finally getting it right at long last.

The biggest thing to do, was to eliminate all possible food problems, like soy, dairy and peanuts to name a few and then gradually after a few weeks add one thing at a time back and see what happens. By having done this I now know to avoid peanuts, soy and other legumes to a lesser extent, it took time and one thing I had not counted on was the water that I had been using for my coffee at work. Sounds bizarre and as if I have finally flipped, but the water was giving me diarhoea which made all my eliminations pointless as I was not having any improvements, until I stopped drinking the water, and then I have reached the base in which to bring other food back, to check for reactions.

Sorry that your brother is not being more sensible with his diet, but that happens and hopefully his daughters do not have the disease. But even if they do, they won't necessary follow in his footsteps the way he follows his diet.

Best of luck and I hope you feel better soon.


Share this post

Link to post
Share on other sites

My sister was diagnosed a celiac in Mar of 2001, I am not a diagnosed celiac and still, I KNOW I am a celiac too and I have been gluten-free since July 2001, and our dad has been gluten-free since Nov 2004. My dad has had stomach problems for as long as I can remember. For years and years he took this little pink pill that we always called his "stomach pill" and he lived on Tums, for years and years. He was 69 when he went gluten-free, me 46, and Judy was 43.

My sister had her daughter tested, which came back negative. One of my sons has been tested and he came back negative. I have a son with violent temper outbursts and I wish he would be tested, he also has ADD and learning disabilities, my oldest son is being treated for acid reflux and the doctor is thinking possible ulcers, yet he doesnt want to be tested, and my daughter simply doesn't want to know. She is intolerant of corn, has occasional panic attacks, and is often sick in the night. Just the other day I found out that the one son I thought was ok, can no longer drink beer (which is a good thing)because he gets sick when he does, so, truthfully, I wish they would all get tested and not be as sick as I was before figuring this out. I was diagnosed with IBS, spastic colon, nervous stomach, anticipatory anxiety, panic attacks, agoraphobia, then the neuropathy symptoms kicked in, carpal tunnel, toes going numb and never a real diagnosis, just paxil to get me by. By the time my sister was diagnosed, I had no insurance and no money for testing, so I did what I could. I went gluten free and I will never do a challenge just to prove what I already know.

Does it really matter where it came from? Fact is, we have it and we must move on from here.


Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

Share this post

Link to post
Share on other sites
Guest cassidy

My father had the same symptoms that I did, however, it was my mother that was diagnosed. On my father's side his mother had stomach cancer and was always very sick. On my mother's side her father died of stomach cancer and always had stomach issues - I clearly remember that. I'm not in contact with my father now - wouldn't know how to find him - so I don't know if he still has problems or knows anything about this, but I'm pretty sure I got it from both sides. I don't know how uncommon that would be, but it just seems strange that both sides were sick.

As far as not feeling better yet, I agree with AndreaB that you may need to do a bit more digging to make sure that all the gluten is out of your diet or that there isn't something else going on. Yes, it takes time to fully heal, but most people feel at least a bit better after a few weeks or a month.

Share this post

Link to post
Share on other sites
Guest nini

no one else in my family has been diagnosed with it... my mom's brother is the only one that's actually been tested for it as he has a lot of the symptoms (as do most of my mom's family) but because it was negative he won't even try the diet to see if it helps, his daughter had such a severe weight problem that she had the gastric bypass surgery and so did my mom's sister, she also had infertility issues, my mom has always had irritable bowel symptoms and was dx'ed IBS some years ago, as well as fibromyalgia and female issues as well. On my dad's side there are a lot of the neurological symptoms as well as gastrointestinal symptoms, but so far my dad is the only one that is on the diet. He's noticing major improvements so this is hopeful. My mom does notice she feels better when she's off gluten and she lost a ton of weight when she did the low carb diet about 5 years ago (she has since put most of the weight back on)...

when I had the genetics testing done I found that I have two of the celiac genes, I am assuming this means I got it from both of them... I suspect my sister and her kids have it as well, but they aren't willing to be tested or try the diet either.

Share this post

Link to post
Share on other sites