Important Personal Questions About Celiac's

[Mabiac]

Greetings to you all!

Perhaps these questions have been asked and answered many times before, but since I'm new to this board I'd like to ask them.

1) Has anyone ever heard of going a lifetime of eating wheat products like pizza, pasta, and sandwiches and then all of a sudden having a major intestinal problem and getting Celiac Disease at the age of 25?

2) Is it possible that an OVER-WEIGHT BLACK person having Celiac Disease?

3) Could having low testosterone be a symptom of Celiac Disease?

4) And finally could Asperger Syndrome (if anyone here has ever heard of it) also be a symptom of Celiac Disease?

[kabowman]

Well, I can try to help on some but I know there are lots out there with more experience but here goes:

1. I didn't start showing real symptoms until my 30's - being DX later in life is common and many times a significant/stressful event will "bring it out" so to speak. Mine started after my ex sued for custody of our two children.

2. Many are overweight, many are normal, many are underweight (I have been all three in the last 10 years).

3. Don' know this one.

4. Asperger's Syndrom is an offshoot (not sure of correct term but you get my meaning) of Autism and many parents of autistic kids find that gluten and dairy free have helped their kids' symptoms.

[mmaccartney]

Greetings to you all!

Perhaps these questions have been asked and answered many times before, but since I'm new to this board I'd like to ask them.

1) Has anyone ever heard of going a lifetime of eating wheat products like pizza, pasta, and sandwiches and then all of a sudden having a major intestinal problem and getting Celiac Disease at the age of 25?

2) Is it possible that an OVER-WEIGHT BLACK person having Celiac Disease?

3) Could having low testosterone be a symptom of Celiac Disease?

4) And finally could Asperger Syndrome (if anyone here has ever heard of it) also be a symptom of Celiac Disease?

I can only comment on #1 and #2 don't have the answers for the rest!

1) Yes, this is certainly possible. Some people have celiac predisposition, but the disease will not be active until something triggers it. For me, I didn't have any symptoms I would have noticed until I had a vasetcomy done. The surgery, or something given to me during, triggered my celiac. My body went through changes that very night, and I have not been the same since. I was 30 when it happened. The onset of symptoms was strange, started with discoloration and swelling of my joints, then moved in violent spells of vomiting, diarreah, and severe abdominal pain. The spells occurred in increasing frequency, along with my arthrititis flaring up badly all along. I'll spare you the rest of the details, and summarize the answer to your question again in one word...Yes

2) There are over weight celiacs out there. the following quote comes from https://www.celiac.com/index.html

The disease mostly affects people of European (especially Northern European) descent, but recent studies show that it also affects Hispanic, Black and Asian populations as well

PM me if you want more info...

[penguin]

I can only help with numbers 1 and 2, sorry...

1: Absolutely. I'm 22 and was dx'ed about 2 mos ago. I started having stomach problems after getting mono.

2: I'm overweight, but not black. Anyone can get Celiac, it's just more common in northern european populations. My best friend is mixed race and she has Celiac in her family, though I don't know which side. Also, some people have weight GAIN as a symptom.

Welcome to the board!

[debbiewil]

1) Has anyone ever heard of going a lifetime of eating wheat products like pizza, pasta, and sandwiches and then all of a sudden having a major intestinal problem and getting Celiac Disease at the age of 25?

2) Is it possible that an OVER-WEIGHT BLACK person having Celiac Disease?

3) Could having low testosterone be a symptom of Celiac Disease?

4) And finally could Asperger Syndrome (if anyone here has ever heard of it) also be a symptom of Celiac Disease?

1. Yes - many, many, many people on this board were diagnosed later in life. I was 50

2. Yes, I've been overweight all my life and ONLY ever lost weight on a low carb diet (when I wasn't eating many grain products.) Celiac is a bit less common in blacks than in whites, but is still a relatively common disease. It's even less common in people of Asian descent, but is still found in Asians. Celiac doesn't discriminate - it's perfectly willing to affect anyone (g).

3. Don't see why not. I'm female, so have paid more attention to that, but celiac can certainly mess up female hormones, cause female infertility, early or delayed menses, and a host of other hormonal problems. If it does that much damage to the females, it probably damages males as well.

4. Don't know if it is symptom, but it can be related. A higher incidence of children with autism and Asperger's are celiac or gluten sensative than normal population.

Debbie

[Fiddle-Faddle]

!), 2), 3), YES!

4) I read that approximately 80% of kids on the autistic spectrum (which includes Asperger's) have sensitivities to gluten and casein.

Welcome to the board, Mabiac! We're all here to ask and answer questions, throw ideas around, and give each other information and support (which most of us have not been able to get from the medical community). A fair number of us seem to have Asperger's, Asperger-type issues, or family mambers with Asperger's. A few of us aren't sure whether we have Celiac, but we all seem to feel a heck of a lot better off gluten (not off carbs, though, which is interesting, isn't it?).

I tried a low-carb diet (my only carbs were whole-wheat), and only lost 4 pounds, but 12 pounds fell off in 2 weeks without my even trying when I went off gluten! I hope that inspires you!

Good luck, and glad you're here!

[Guest nini]

Greetings to you all!

Perhaps these questions have been asked and answered many times before, but since I'm new to this board I'd like to ask them.

1) Has anyone ever heard of going a lifetime of eating wheat products like pizza, pasta, and sandwiches and then all of a sudden having a major intestinal problem and getting Celiac Disease at the age of 25?

2) Is it possible that an OVER-WEIGHT BLACK person having Celiac Disease?

3) Could having low testosterone be a symptom of Celiac Disease?

4) And finally could Asperger Syndrome (if anyone here has ever heard of it) also be a symptom of Celiac Disease?

1) Yes 2) Yes (In fact a Celiac expert that spoke at our support group meeting said that the highest incidence per capita of celiac is somewhere in Africa... and I was incredibly overweight before dx but not black) 3) Yes 4) and Yes

[Mabiac]

Thank you all for your responses.

I found them all the be suprisingly helpful!

Especially the part about a stressful event triggering this disease.

My symptoms started appearing a few months after my mother died.

Then I was hospitalized with an "intussusception" of the small intestine that they wanted to operate on but I refuse to let them and it gradually subsided.

Since then I have had a host of digestive discomfort that only seems to ease by:

-taking acidophilus

and

-abstaining from foods that contain gluten.

But I haven't been diagnosed with Celiac disease or even gluten intolerance yet, so it may be something else.

But "gluten free" has worked for me so far.

The "Chinese fried rice" threw me off for a while though.

[Guest nini]

it sounds like it could be Celiac... if you want to be tested for it you will have to keep consuming gluten. BUT if you don't mind self diagnosing, stay on the diet and get well! I believe that positive dietary response is your best indicator of whether or not it is Celiac or Gluten Intolerance... and as far as the difference between the two, technically Celiac is confirmed by total villous atrophy, but the treatment is exactly the same as Gluten Intolerance, a strict adherence to the gluten-free diet for life.

I say, listen to your body and if it's telling you that gluten is bad for you, then it is!

[Ursa Major]

1) Has anyone ever heard of going a lifetime of eating wheat products like pizza, pasta, and sandwiches and then all of a sudden having a major intestinal problem and getting Celiac Disease at the age of 25?

2) Is it possible that an OVER-WEIGHT BLACK person having Celiac Disease?

3) Could having low testosterone be a symptom of Celiac Disease?

4) And finally could Asperger Syndrome (if anyone here has ever heard of it) also be a symptom of Celiac Disease?

First, welcome to this board!

Here goes:

1) You likely had other symptoms before (the arthritis is likely caused by celiac disease), some people diagnosed by biopsy NEVER had any gastrointestinal symptoms before. In fact, sometimes the only obvious symptom (not so obvious to most doctors) is often anemia. I had fibromyagia all my life, joint pain, too skinny as a kid, and gaining more and more weight as an adult, eight miscarriages, alternating diarrhea and constipation, skin problems, anemia......the list goes on and on with more recognized celiac disease symptoms. I wasn't diagnosed until the age of 52! And even then I had to diagnose myself, with my doctor finally agreeing (she said that I had all the classical celiac disease symptoms last summer, but since I was gaining weight, she didn't think that could be and tested me for everything but celiac disease).

2) Yes, it is estimated that possibly up to 40% of people with celiac disease are over-, rather than underweight (many of whom won't be diagnosed by doctors, because, like my doctor, are misinformed).

Apparently, most of the black people in Africa can't tolerate gluten, that's why our 'help' of shipping wheat over there to feed them, makes them sick! So, I gather that blacks are every bit as susceptible as whites, maybe even more so.

3) Yes, it can cause infertility in men as well.

4) No, it cannot cause Asperger Syndrome (as it is genetic as well), but rather, it seems that autistic people have a higher chance of having celiac disease. And eating gluten is extremely unhelpful when it comes to autistic symptoms. I know, I have AS as well.

I've read a story here somewhere of a grandfather, who's little granddaughter was so autistic, that she wouldn't even look at him. She wouldn't smile, she wouldn't hug him, in fact, she didn't even acknowledge he was there.

When she was put on a gluten free diet, within a week she'd run to him when he came to visit and hugged and kissed him! She was still autistic, but went from low-functioning to high-functioning on the gluten free diet.

I also find that I can tolerate other people, noise, lights etc. somewhat better on a gluten free diet. I am also not as clumsy.

[ianm]

I am a white guy of Northern European descent and was obese but not anymore. I was 36 when I figured it out for myself what was wrong. It is so obvious to me what the problem was and none of the doctors I ever went to had any clue as to what was wrong. I am healthier now at 38 than I ever was at 18. If cutting out the gluten works then go gluten free, you won't regret it. I think celiac or gluten intolerance is more widespread among a variety of ethnic groups than is currently believed.

[Jnkmnky]

I thought my son had asperger's but he has Celiac. When the peptides get into your brain via a leaky gut, you get a doped reaction. Gluten free, my son is completely normal. On gluten, he's extremely dull, doesn't really talk, can't focus, has no energy, looks drugged. That's the PEPTIDES.

[Mabiac]

Nini

it sounds like it could be Celiac... if you want to be tested for it you will have to keep consuming gluten. BUT if you don't mind self diagnosing, stay on the diet and get well! I believe that positive dietary response is your best indicator of whether or not it is Celiac or Gluten Intolerance... and as far as the difference between the two, technically Celiac is confirmed by total villous atrophy, but the treatment is exactly the same as Gluten Intolerance, a strict adherence to the gluten-free diet for life.

Thank you,

As long as I continue to feel better I might just take your advice and stay gluten free.

Ursula

Lol........

Well, just like I haven't been diagnosed for gluten intolerance but I seem to show most of the symptoms---

I haven't been diagnosed with Asperger syndrome either, but I show most of the symptoms.

Infact, the reason I even read up on all this stuff is because I have so few friends and spend so much time alone.....lol....so why not spend it at a book store and try to solve my problems?

It's always nice and unexplainably "comforting" to meet another Aspy!

Ianm

am a white guy of Northern European descent and was obese but not anymore. I was 36 when I figured it out for myself what was wrong. It is so obvious to me what the problem was and none of the doctors I ever went to had any clue as to what was wrong. I am healthier now at 38 than I ever was at 18. If cutting out the gluten works then go gluten free, you won't regret it. I think celiac or gluten intolerance is more widespread among a variety of ethnic groups than is currently believed

That's kinda what I wanted to hear.

Although I'm a pretty big guy, I've never been as strong as I looked and was always "out of shape" even though I wasn't obese.

Since my early teens I've worked out off and on lifting weights and doing cardio but just couldn't get the muscularity that I wanted.

But now in my late 20s after 3 or 4 weeks trying my damnedest to avoid all gluten and not even working out BLOOD VEINS are starting to pop up on my arms, I'm dropping weight, and "other things" are starting to work better....lol.

That's why I think gluten intolerance may have even affected my testosterone levels.

[Ursa Major]

On gluten, he's extremely dull, doesn't really talk, can't focus, has no energy, looks drugged.

I am at a loss why anybody considered AS for him, Aspies are NOT dull, their speech is excellent, they have extraordinary focus, and they don't look drugged. Classic autism sounds somewhat like that.

Mabiac, I self-diagnosed myself with everything that matters. First Tourette Syndrome and Asperger Syndrome, which were later confirmed by specialists. And then last year celiac disease (confirmed by an amazing dietary response, and agreed to by my doctor).

And of course, I drive my family nuts with my 'lectures' on whichever I am presently researching (which obviously is celiac disease right now).

I don't know how I've managed to raise five kids, and stay married, because I HATE being around people all the time! But of course, I didn't know anything about AS when I got married. And I managed with the kids because I had to, and I hear all the time what a good mother I am, because I actually like little kids (many Aspie women can't stand being around kids). The problem are teenagers, they drive me nuts. Still, I manage.

Anyway, the gluten free diet has not 'cured' the AS, as it isn't an illness but a difference. It has just helped with some of the issues that are 'side effects' of the AS, so-called co-existing issues. Like clumsiness for instance. And now my skin doesn't ache any more, so being touched isn't as big a problem now (even though I still don't like it a lot of the time).

[Nantzie]

Hey! My husband has low testosterone. He uses the Androderm patches and feels much better on them. He also feels much better on a gluten-free diet. He won't go for testing, but he has been "doing Atkins" for a couple months now. The last time he had gluten as a cheat (rather than a non-gluten carb like potatoes) he was SICK as a dog for a couple days.

Gluten-free is the oddest thing. I've been on and off diets (moderately overweight) for years, and gluten-free is the easiest thing I've ever done. Once you know that gluten makes you feel so miserable, NOT eating it is easy.

Glad you found us here.

Nancy