How Many Family Members Do You Think Are Affected By Gluten?

[Jestgar]

I'm writing a paper for class and one of the points is to justify why I think my chosen disease is genetic. As my topic I've chosen gluten sensitivity (considered separately from celiac disease) and although I won't use the results from this poll in my justification (I'm going to tie it to celiac disease), I was curious how many people feel that this whole gluten thing is a family affair.

I don't care how you were diagnosed, only that you are certain that eating gluten-free makes you feel better.

You can choose multiple answers. Sorry about the weird format of the questions - I wanted more specific details on close relatives so parents, kids, sibs are set as separate questions.

[Jestgar]

Additionally, one article I read suggests that gluten sensitivity/gluten intolerance is NOT autoimmune. For those of you with a negative celiac disease test, do you personally feel you have autoimmune issues related to gluten, or do you have other (more than one) autoimmune diseases which might suggest you do have autoimmune issues (or a predisposition to autoimmune disorders).

[Lisa]

Jestger,

I responded to your poll, but my answers are more complicated than indicated.

My father always had stomach issues and died of a heart attack at 62, in 1977.

Mother passed away at 42, in 1956. Osteoporosis ran strong with her mother and sister.

Brother working in South East Asia has inquired with me about digestive issues.

My nephew pops antacids and niece has a "nervous stomach.

My younger daughter has stopped eating lunch, unless we are close to home and has tested negative for Celiac. Two year older daughter has Raynaulds Syndrome since high school and now is 30.

WOW, it's weird when you write it down! No one has been diagnosed with Celiac, other my me. But, let me be clear...my biopsy was "consistent" with Celiac Disease. I removed gluten and I improved dramatically over a six months time. My Primary Physician (and close friend) does not agree with the diagnosis.

[Skylark]

I'm not sure I understand how to answer. My grandmother and great-grandmother had signs of gluten issues; Mom is non-celiac gluten intolerant. I checked parent(s) only and grandparents/aunts/uncles/first cousins. I can change it if that's not right.

I was never tested. I have Hashimoto's thyroid disease and feel my gluten sensitivity is likely celiac. I had mouth ulcers from gluten that are supposed to be autoimmune and a patch of ferociously itchy, blistered skin on my hand that I thought was whitlow herpes but has not recurred since I went strictly gluten-free. I now suspect it was DH.

[beebs]

I absolutely have other autoimmune conditions, I'm not sure which came first - they have all been happening for so long

So My mother is a Coeliac, as am I (pretty convinced but no biopsy) two of my children are gluten free and doing much better on it after years of malabsorption issues, and my husband - who is gluten free just because the house is now gets sick if he eats gluten but has never been tested. There is RA in his family.

[Jestgar]

  On 1/23/2012 at 1:24 AM, Skylark said:

I'm not sure I understand how to answer. My grandmother and great-grandmother had signs of gluten issues;...

You did it right. If you strongly believe that a family member showed signs of gluten issues, (and they haven't tried the gluten-free diet) mark 'em down.

[luvs2eat]

I was diagnosed in 2002, or thereabouts. All three of my daughters have been diagnosed in the last five years. NONE of my siblings have been diagosed, even tho they all can not deny how much better they feel lowering or doing away w/ gluten. I get it... my sister lives in France. I'd ignore celiac as long as I could to be able to eat REAL French bread, but no second-degree relatives are owning up to gluten issues.

[beebs]

I forgot to mention - my Grandfather (mothers dad) was diagnosed bowel cancer in his 40's after a lifetime of sickly tummy, I think he was coeliac as well.

[love2travel]

I was diagnosed in Februuary 2012 and went gluten free a month later (I wanted my last binge).

My Mom almost certainly has celiac but is satisfied with her negative bloodwork results. She is not taking it any further and truly believes she does not have it.

A sister is gluten intolerant.

I am positive that a nephew has it but as his bloodwork was negative, parents not taking it further.

This is not what you are looking for but since being strictly gluten free for ten months without cheating even once, I do not feel any different at all. However, I did not feel sick eating gluten. So, initially it was tough as I had no motivation to do it. Now I am so used to it - it is second nature. My bloodwork is now negative and my vitamin levels are all perfect so I am absorbing once again!

But I did have miscarriages (no children) and I attribute that to celiac disease now that I am far more knowledgable.

[pricklypear1971]

My Dad's side:

Dad tested positive for multiple food allergies but refused to eliminate anything. Has always had sinus issues.

Grandfather died of colon/digestive system cancer

Grandmother died from complications of intestinal blockage. She was 4' 11" and had multiple miscarriages and kidney issues. Low potassium. Knew that food had an effect on the body - was progressive with supplaments.

Cousins and Aunt have gallbladder issues and one has Crohn's disease.

Mom's Side:

At least 3 cases of thyroid disease.

Aunt has had complete hysterectomy, gallbladder removed. Won't respond re:Celiac.

Mom has thyroid disease, refuses to be tested for Hashis or Cekiac but fiddles with gluten-free. She has potty issues, fibro type pain, food intolerances.

Me: Hashimotos, probably endometriosis, wasn't tested for Celiac but ND thinks Celiac with DH.

Hubby: carries at least half DQ2. No obvious symptoms and seems to not be challenged by a gluten challenge.

Son: some low vit panel results, Celiac panel negative. Going to try challenge.

[kareng]

I answered parents & kids. My parents have stomach "issues" but don't want to be tested. My brother has Reynaulds and who knows what else he won't tell us. My kids have blood tested negative and don't have a lot of issues but one has a " delicate" stomach and the other has noticed that eating gluten lighter helps his skin and his bathroom ( which isn't bad it just makes it slightly better).

[MitziG]

Me, both kids, and my mom are all biopsy confirmed celiac. My dad has never been tested but is at the very least gluten intolerant. Aunt (mom's sister) has extreme reaction to gluten, first cousin (aunts daughter) has DH. Her two siblings refuse to be tested for celiac or try being gluten free, but both have terrible stomach troubles and one was dx with dysautonomia. My sister tested negative and refuses to admit she could still have a problem. Brother was emaciated first 20 years of his life, now is overweight with terrible allergies, asthma and eczema, but reuses testing. Grrr...family.....

[Roda]

Not sure if I answered right. I know both my kids have gluten issues with youngest one having celiac and the other technically NCGI so I included them in my answer. They are both gluten free.

I suspect my father has it as well as my brother. Dad had one blood test years ago, but I don't think he had all the right tests done. He developed some symptoms last year and had a colonoscopy done, but the doctor refused to an EGD saying he didn't need it. His colonoscopy turned out normal, so he was left with no answers for the problem he was having. He is good with it too. He probably will not get tested again.

My brother is a walking health disaster. He was diagnosed with sarcoidosis in 1992 and it has been in remission since 6+ months after diagnosis. He did have an accompaning rash with it on his legs..can't remember what it was called. He has horrible skin and keeps a very bad rash on his head and face. Don't know if it is anywhere else. He keeps a beard to hide it. He is extremely lactose intolerant, overweight and has daily GI issues. He was making fun of me early on and I told him that I thought he had it too and that left untreated he was going to be miserable. He plainly stated he would rather die than to give up beer and bread and didn't care. He has never been tested and probably never will.

My neice(my only brothers daughter) has been having some GI related issues for the past year plus. Her doctor did do a colonoscpoy and told her that if it came back clear then they would test for celiac. They found evidence of colitis. She says certain foods make her feel worse and avoids them. Over the summer she was complaining that some of her symptoms had come back and she didn't understand why. Her mom told her it was stress. At school she said she had been eliminiting wheat. Being home for the summer she was was not, and I wonder if there is a connection. Hmm... She also has not been tested since she had findings on the colososcopy so she hasn't persued it.

[ravenwoodglass]

I was the first one diagnosed and kids were tested 6 months later. Although my doctors firmly diagnosed me celiac I did have false negative blood work but the second challenge the GI doctor demanded almost killed me.

I have no doubt my Mom had celiac as she also had DH and died very young of a excretory system cancer.

My Dad also had many of the same symptoms I had and my twin died as an indirect result of autoimmune liver destruction. His freshly biopsied liver burst in an auto accident but he was told he would be dead within 2 years of the biopsy as his liver was gone. He had many of the same symptoms throughout childhood that my DD did before she was diagnosed.

[Jestgar]

This is awesome you guys! It does help confirm in my mind that sensitivity to gluten is genetically coded (not that I was questioning it).

I'll be working on the paper for the next couple months and I'll keep track of the research I find on GS/GI vs celiac disease - for anyone that's interested.

[UKGail]

I have 2 (of 3)aunts on my Mother's side, one of which has also thyroid issues, the other had another nasty auto-immune disease which thankfully resolved prior to diagnosis, 2 cousins, one non-celiac cousin's child - all confirmed celiacs. There is also me - non confirmed celiac/severely intolerant, a gluten and lactose sensitive mother, a severely lactose intolerant daughter with stong suspicion of celiac/gluten intolerance, grandmother with RA, her siblings with unidentified poor health involving being underweight and infertility, great grandmother with pernicious anemia. The whole family with various degrees of ezcema, asthma, allergies and other grumbly health problems. The remaining gluten eaters generally don't want to be tested. One other cousin newly discovered hypothyroid and now in testing for celiac. You could write a book on it! I don't think there is a single normal, healthy person in my mother's extended family.

[faithforlife]

My youngest son who was very symptomatic was diagnosed celiac by bloodwork, genetics, and endoscopy. We tested our family of 7 ( children ages 9 and under) for genetics and for antibodies and discovered half of us were high risk, half of us moderate, and one Very High risk genes. My son and I were both high risk gene and lots of antibodies. The others had no antibodies ( yet) but felt better on gluten-free diet especially in the bathroom;).

I lost my Dad when he was 59 to severe complications with diabetes-kidney and liver failure. My mother is diabetic and has several other uncurable and serious health problems. My sister and brother have health problems too. I have 2 uncles (brothers) who died suddenly from heart failure.

As you can see I welcome the gluten-free diet if it will help me be healthier.

[IrishHeart]

  On 1/23/2012 at 1:21 PM, Jestgar said:

I'll be working on the paper for the next couple months and I'll keep track of the research I find on GS/GI vs celiac disease - for anyone that's interested.

I am very interested, J! I most definitely think it is a familial autoimmune disease. I am unable to persuade my large, extended family (except Mom who is gluten-free now and doing great!) that they are certainly gluten sensitive or intolerant--if not celiacs themselves. Any more ammo I can get will be appreciated!

I am the first DXed celiac. (you notice I say first because I know I am not going to be the last) My doc ran the genetic test--- just for fun ---and I am double DQ2.

My father certainly was a celiac if there ever was one--and if I knew back then what I know NOW, I would have put him on a gluten-free diet. He drank maalox by the gallon, took PPIs, had ulcers, h.pylori, iron deficiency anemia all his life, periodontal disease, and he required blood transfusions for low hematocrits, needed a heart valve replacement etc, etc. and finally, had kidney disease requiring dialysis for 2 months before he died but his body had given out.

It was during his prolonged illness that I, myself triggered the celiac, although I had MANY symptoms all of my life, from gastro to reproductive to neurological to musculoskeletal. Gall bladder disease, liver, kidney, GYN and thyroid issues, hypoglycemia, pernicious anemia, hypocalcemia, osteopenia, osteoarthritis and so much more. My entire body and my brain was impacted. It took me 3 years to figure it out--I saw dozens of specialists-- but not before developing major life- threatening symptoms and losing massive muscle mass and tone.

My Mom had gall bladder disease, delayed menarche and reproductive issues, GERD, "IBS", and in the last 3 years, developed low D and Hashimoto's.

I have MANY relatives besides my parents-- sibs, niece, nephews, cousins, aunts on both sides who are DXed with:

Thyroid disease (both Hashi's and Graves & one had thyroid cancer)

Cancer (lung, breast and melanomas)

Rheumatoid and osteoarthritis

Crohn's disease

MS

Liver Disease

Heart Disease

Kidney Disease

Type 1 diabetes

Addison's disease

Asthma and various allergies

Pernicious anemia

Gall bladder Disease

Raynaud's syndrome

Various GI problems

Depression and anxiety

There may be others, but those are the ones I know about.

Even after all I have told them--and explained the way AI diseases run in families and how they could feel better-- no one will get tested. Just a shame.

Best wishes with your research!!

[Austin Guy]

I am rairly recently self-diagnosed and looking at family I am convinced my mom was gluten sensitive. I also suspect a my daughters, a brother and 3 nieces. I will have one of my daughters tested, but my grown daughter, who has IBS, will have nothing to do with it.

Regarding other autoimmune disorders, I had symptoms what I think is rheumatoid arthritis, which is an autoimmune disorder, and those symptoms are 90% gone after being gluten free.

I also had immune thrombocytopenic purpura (ITP) disappear after going gluten free.

[Skylark]

  On 1/23/2012 at 1:21 PM, Jestgar said:

I'll be working on the paper for the next couple months and I'll keep track of the research I find on GS/GI vs celiac disease - for anyone that's interested.

I'm definitely interested!

I'd also be interested to know if you find any info that supports Dr. Campbell-McBride's gut dysbiosis hypothesis. She posits that a lot of problems are because gut flora are passed on during birth and since the introduction of antibiotics each generation has progressively worse flora. She claims that it explains the increase in prevalence of autism, depression, autoimmunity, allergies, and sensitivities in the 20th century.