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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Cystic Fibrosis - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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Cystic Fibrosis Could it be linked to celiac? Rate Topic: -----

#1 User is offline   Fiddle-Faddle 

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Posted 02 April 2006 - 11:59 PM

I just sneaked a look at the lecture my husband is preparing for tomorrow's biochem lecture--the topic is cystic fibrosis.

The main symptom is thick, sticky mucus clogging the lungs, and it is caused by an abnormal gene.

What caught my eye was something else on the symptom list:
1)ongoing diarrhea or bulky, foul-smelling or greasy stools,
2) huge appetite but poor weight gain and growth as a result of chronic malnutrition, and
3)stomach pains and discomfort caused by too much gas in the intestines.

Sound familiar?

I'm probably at the point where I think the whole world has celiac, and I know that they've isolated the CF gene, but --what if these people also have celiac? Or what if people with celiac are the genetic carriers of CF--being symptom-free for CF, nobody would ever think to test us for that gene.

Radman, where are you? I'd really like to hear your opinion on this?
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#2 User is offline   trents 

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Posted 03 April 2006 - 04:24 AM

I'm certainly no geneticist or biochemist but I think with CF the mucous problem is not just limited to the digetstive track but is found systemically, i.e., in the respiratory track as well so it would seem to be a coincidence.
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#3 User is offline   Fiddle-Faddle 

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Posted 03 April 2006 - 05:15 AM

I don't think the mucus is in the digestive tract, just the respiratory tract (but I could be wrong).
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#4 User is offline   nikki-uk 

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Posted 03 April 2006 - 07:09 AM

Cystic Fibrosis involves excess mucus in the respiratory tract and the digestive tract.
It is a genetic fault (and I think docs now know which one is responsible)

Strangely enough my son was tested for CF as a baby(through a test called a 'sweat test')due to constant chest infections and the foul stools.

Luckily he tested negative to CF.

Fast forward 12yrs and the same son is now being tested for celiac disease (the 'foul stools' never went away)
His Dad was dx 18months ago and it switched on a lightbulb in my head!

I don't think that the CF gene is related to the celiac disease genes as it's a recessive gene.
I think (correct me if I'm wrong anyone)that both parents have to be carriers of the CF gene for your child to have a 1 in 4 chance of having CF.
It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki


Husband diagnosed with Coeliac Disease 2004 by biopsy
Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#5 User is offline   num1habsfan 

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Posted 03 April 2006 - 07:22 AM

View Postnikki-uk, on Apr 3 2006, 09:09 AM, said:

I think (correct me if I'm wrong anyone)that both parents have to be carriers of the CF gene for your child to have a 1 in 4 chance of having CF.


My sister has CF, and it is only my dad who has the carrier gene, and I guess I do too, so when/if I have kids, they both have the chance of having CF and Celiac.. but it'd be interesting to know if they were connected, because my sis always complains about having stomach pains after eating...

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#6 User is offline   nikki-uk 

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Posted 03 April 2006 - 07:29 AM

Ok!-thanks for correcting me :)
It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki


Husband diagnosed with Coeliac Disease 2004 by biopsy
Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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#7 User is offline   jenvan 

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Posted 03 April 2006 - 08:46 AM

I haven't heard anything of them being connected genetically... So that leads me to think they are both determined with genetic markers independent from each other...and if someone has both it is a coincidence per se. Like, if you have blue eyes and brown hair--they are each determined independently. Developing another autoimmune disease or secondary illness is often linked to Celiac b/c of its impact on the body and long-term effects. Also a coincidence, that some of the 'symptoms' overlap. Perhaps I have missed it, but I have not read anything that might lead me to believe there is genetic overlap between the two. Maybe Tiffany has a good answer..she is a scientist
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Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free
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#8 User is offline   TCA 

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Posted 03 April 2006 - 10:33 AM

We went through CF testing for my son. I think they do it pretty standardly for failure to thrive kids. The sweat test was negative. We had a scare with our daughter a couple weeks ago. They found a pneumatocele in her lung and we were researching like crazy to see if it could be CF. It doesn't look like a possibility, thank goodness. From what we read, both parents have to be carriers of the gene. The mucous is very thick in both the respiratory and digestive systems. Meg has horrible mucous problems in the GI track, so we were very concerned. We get to see first had how bad it is with different foods since she has a G-tube.
If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28
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#9 User is offline   Ashley 

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Posted 03 April 2006 - 04:46 PM

I'm not really sure if it could be linked or not, I really don't know much about it. But, I was tested for Cystic Fibrosis last month, and it came back negatively.
-Diganosed with Celiac's Disease on April 15, 2005. "Art washes away from the soul the dust of everyday life"-Picasso
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#10 User is offline   Fiddle-Faddle 

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Posted 03 April 2006 - 05:35 PM

View Postnum1habsfan, on Apr 3 2006, 11:22 AM, said:


My sister has CF, and it is only my dad who has the carrier gene, and I guess I do too, so when/if I have kids, they both have the chance of having CF and Celiac.. but it'd be interesting to know if they were connected, because my sis always complains about having stomach pains after eating...

~lisa~


My 7-year-old used to complain about stomach pains after eating--until I put the whole family on "gluten-lite" (gluten at only one meal a day) so that I woudn't ahve to prepare 2 breakfasts and 1 lunches. Also, his eczema went away.
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#11 User is offline   skoki_mom 

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Posted 03 April 2006 - 08:56 PM

View PostFiddle-Faddle, on Apr 3 2006, 07:35 PM, said:

My 7-year-old used to complain about stomach pains after eating--until I put the whole family on "gluten-lite" (gluten at only one meal a day) so that I woudn't ahve to prepare 2 breakfasts and 1 lunches. Also, his eczema went away.


Gluten-lite, I like that! That is probably the best way to describe my kids diet around here. I fix whatever they want for breakfast or lunch (except pancakes are always gluten-free now, they like them better anyhow), but dinner is ALWAYS gluten free cuz I am not slaving over dinner I can't eat. Besides, I know for a fact the only thing their dad knows how to cook is pasta, so they eat tons of it at his house. The only thing I make separate at dinner is pasta cuz mine is just too expensive. However, my 5 year old is always pilfering mine and saying she likes it better.

In response to the original CF question, CF is most definitely automsomal recessive. Both parents must carry the recessive gene, giving each child a 25% chance of having the illness, a 50% chance of being a carrier of the gene but not ill with the disease, and a 25% chance of not inheriting the gene at all. As others have posted, digestive troubles are a big part of the disease and people with CF have to take a lot of digestive enzymes to digest their food. I would not think celiac disease would be related, although combinations of illnesses are certainly possible in any individual. I can tell you that CF can present at birth, as we sometimes test premature babies in the NICU for CF if they present with excessive respiratory secretions or feeding intolerance or other bowel issues.
LORI

Dx celiac disease Aug 25/05, ate KFC that night and gluten-free ever since
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#12 User is offline   Felidae 

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Posted 03 April 2006 - 10:13 PM

This is interesting because when I was little (three or four) I was tested for cf. It came back negative, but I wonder if they had tested me for celiac what the result would have been. Back then they didn't know as much about either disease as they do now.
Tapioca intolerant
First cousin dx'd with Celiac Disease
Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.
Gluten-free since June 2005
Dx with IBS February 2005
Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)
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#13 User is offline   azmom3 

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Posted 28 July 2006 - 11:08 PM

I know this is an old topic, but I am just now familiarizing myself with celiac since my 22 month old was diagnosed a couple weeks ago. I had never heard of this before and nobody in my family had celiac that we were aware of. I did have 2 brothers and 1 sister who passed away from cystic fibrosis. I was reading a book about Celiac (sorry, I don't remember which one) and one thing that struck me in there was that CF and celiac disease co-exist. I believe it said that if you have CF, you're chances of having celiac disease were greatly increased. When I mentioned to my mom about my son having celiac, she remembered having researched that years ago when they were trying to find out what was going on with my brothers and sister. They were never tested for it though. I wonder, now that I have a child with celiac disease, what the likelyhood was that any of them also had celiac disease. We'll never know,but that's the closest thing we have in our family to resembling the celiac symptoms and since celiac runs in families, I wonder if it's connected.
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#14 User is offline   2kids4me 

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Posted 31 July 2006 - 05:50 PM

Many diseases can occur more commonly together - diabetics have increased chance of being hypothyroid, celiac and hypothyroidism can occur in the same individual, there are known genetic links for all autoimmune disease and if one family member has one - then relatives are ina higer risk group. It isnt just celiac disease that has this "link", also different conditions can have the same symptoms but not be related - diabetes mellitus and diabetes insipidus have similar sames and symtoms except they are two unrelated conditions. MS can present like severe B 12 deficiency yet are not related.
See the following sites for autoimmune disease with common links:

http://www.aarda.org/index.php

http://www.diabetesm...or.com/aefs.htm

[/quote]

Quote

The syndrome of multiple endocrine organ involvement (and other organs that don't have hormones, like the skin) is called by several names, including: autoimmune endocrine failure syndrome,
autoimmune polyendocrine syndrome,
autoimmune polyglandular syndrome, and
immunoendocrinopathy syndrome.

This syndrome might include any or most of the following disorders:

type 1 or autoimmune (1) Diabetes
Vitiligo (white patches on the skin that lack pigmentation)
premature menopause
Addison's disease (adrenal gland failure)
Pernicious Anemia
Hypothyroidism (underactive thyroid gland), hyperthyroidism (overactive thyroid gland function), and thyroiditis (inflammation of the thyroid gland).
Alopecia Totalis (loss of body hair)
Parathyroid gland failure
Pituitary gland failure
Candidia infections of the skin and mucus membranes


Two varieties of the syndrome have been described:


Type I
Type 1 Diabetes
Vitiligo
premature menopause
Addison's disease
Pernicious Anemia
Hypothyroidism, hyperthyroidism, and thyroiditis
Parathyroid gland failure
Alopecia
Pituitary gland failure
Candidia infections of the skin and mucus membranes
Malabsorption syndrome
Chronic Active Hepatitis

Type II
Type 1 Diabetes
Vitiligo
premature menopause
Addison's disease
Pernicious Anemia
Hypothyroidism, hyperthyroidism, and thyroiditis
Parathyroid gland failure
Alopecia
Myasthenia gravis
Parkinson disease
Celiac disease


If someone has several of these conditions, or if one member of a family has one of these conditions, and another family member has another, it's very likely that they may have antibodies (2) against other endocrine tissues. (And, if a biopsy of affected tissue were obtained, it will show lymphocytic infiltration (3).
[quote]
Sandy

Type 1 diabetes - 1986
hypothyroid -1993
pernicious anemia
premature atrial beats
neuropathy
retinopathy
daughter is: age 15
central hypotonia and developmental delay
balance issues (rides an adult 3 wheel bike)
hypothyroid 1996
dermatographia - a form of angioedema 2002
celiac 2004 - by endoscopy
diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet
recovered from Kawasaki (2003)
lactose intolerant - figured out in Oct/06
Gilberts syndrome (April/07)
allergy to stinging insects
scoliosis Jan 2008
nightshade intolerance - figured out April 2008
allergy to Sulfa antibiotics

son is 13
type 1 diabetic - 2003 diagnosed on his 9th birthday
celiac - 2004 by endoscopy
lactose intolerant - figured out Nov/06
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#15 User is offline   azmom3 

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Posted 31 July 2006 - 07:02 PM

Thank you for all that information. My grandfather had Parkinsons and one of my brother's had diabetes.

I noticed that your daughter was diagnosed with Aspergers....how much have the symptoms improved with a gluten free diet? Also, I would assume you're pretty knowledgeable about this syndrome...my son exhibits many, but not all of the symptoms, and I'm wondering if you know if there's a wide spectrum for how this affects kids. We are pretty sure he is ODD. He has every symptom of that. In addition to those symptoms though, he exhibits many of the ones under Aspergers, but some he doesn't have at all. I strongly suspect celiac as well. We've always been told he's just small, but he looks very skinny and pale to us. His behavioral problems have gotten out of control and just due to the fact that his brother was just diagnosed, makes us wonder. There are so many things out there and I feel like we have to do all the research and then go to the doctors with what we think is going on. Any insight you could give, I'd greatly appreciate. Thanks!
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