Genetic factor

Discuss issues related to multiple intolerances here.

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Ann52
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Genetic factor

Post by Ann52 »

Hi All, I was diagnosed with MC in November 2016. My brother was just diagnosed this morning with Celiacs. I think that there must be a connection between these two autoimmune diseases. Does anyone else have a family member with Celiacs?
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Post by brandy »

Yes, my mother is celiac. We suspect my grandmother who lived to be 96 was celiac due to lifelong gastro issues that she blamed on taking oral mercury as a child for migraine headaches. Oral mercury (like the little mercury beads) was the prescription for migraines in the early 1900's
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Post by Gabes-Apg »

There is a strong genetic factor to all IBD's
there are a few genes that are linked to celiac and to increased gluten sensitivity.
My mother has Crohns - and grandparents on both maternal and paternal side had issues with dairy.

one thing that we have learnt genetic wise is that it is one factor in the matrix.
it generally takes a combo of factors, ie diet, lifestyle, nutrient deficiencies, toxins, medications to kick start IBD's

The main gene linked to Celiac and IBD is HLA - DQB1
and the status of this is what indicates either gluten sensitivity or celiac

IE - example of result types

HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0603
Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6). Predisposes to MC and gluten sensitivity, but not celiac.

HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0604
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6). Both of these genes predispose to gluten sensitivity. Note that this is a double DQ1 combination, usually connected with increased sensitivity, and more food intolerances.

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Post by kbb »

I have both. Feels to me it's the same thing, just manifested in a different part of the intestine. But I'm pretty new to all this and totally not a doctor.
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Post by Marcia K »

I have a niece and nephew with Crohns. A brother has not been diagnosed with Celiac Disease, however once he eliminated gluten from his diet the D that he had for 6 years stopped. The D was so bad that he needed surgery for an anal fistula. I am of Irish heritage which also plays a factor in IBD.
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Post by Ann52 »

Thanks for all the information. I am 100% Irish which is very interesting. I saw my GI Doctor today and will be bounced down to 3mg Budesonide tomorrow. He also informed me that I have IBS as well as MC. I told him I joined a MC support group. He was fine with the elimination diet and that I am eating a gluten free as well as taking B-12, D-3 and bathing in Epsom salts. I was retested for Celiacs and something else which he didn't really explain. I was really surprised that he agreed that this is a good thing for me.
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Cardiologist

Post by Ann52 »

I saw my cardiologist today. He insists that my gut pain is not due to neither heart condition nor GI issues. He believes that I have a skin condition that requires a dermontoligist. So so fed up. I see my Dermontologist on Tuesday. So, so fed up with being passed around!
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Post by tex »

Ann,

The reason he makes that mistake about the gut pain not being due to GI issues is because there are no nerves/pain sensors in the mucosa of the intestines. The original description of CC mistakenly failed to list pain as a symptom of the disease, so docs who aren't up-to-date (or open minded) still think that MC cannot involve pain. :roll:

However, there are nerves/pain sensors in the serosa, which is the outside layer surrounding the intestines, and when the guts are stretched and contorted due to a reaction, those nerves detect plenty of pain.

You're right — medicine has evolved into quite a racket. In far too many hospitals/clinics, everyone wants a slice of the pie (and they often get it). And the hospitals/clinics love it because virtually every doctor involved will order her or his own tests, adding up to megabucks for the institutions.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Ann52 »

Thanks Tex, I am going to show this to my primary and dermatologist. My skin looks so horrible and you can see every vein in my body. I am a green and blue color as well as black and blue marks all over my body My mother is coming to visit me in Miami the first week in March. She will be traveling from Philadelphia. I warned her of my condition, but she will probably not recognize me at the airport due to how this disease has destroyed my body. I weigh 98lbs as my usual weight is 120lbs.
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Post by tex »

Ann,

You'll be able to see improvement not only in how you look and feel, but you'll also notice that you're able to regain some weight after the inflammation begins to fade away. I can remember a long period of time when I hated to look in the mirror because I looked like death warmed over. I looked worse with each passing week. :roll:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Ann52 »

Thanks Tex, I saw my primary today. She put me on Cymbalta as my cardiologist believes that my pain is due to neither GI or a heart condition. I have been gluten free for 3-weeks now. Hopefully it will help with the nerve pain and bring down inflammation after I informed her about the serosa. Has anyone been on this medication and did it help?
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Post by tex »

Others have been on the medication, but most had to stop taking it because SNRIs trigger MC for many patients.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gabes-Apg »

I have not taken the medication but my initial hesitance is that it was approved as an anti-depressant first off and to assist nerve issues as secondary.

All medications and especially anti depressant type medications have risks, my hesitance with anti depressant medication is that most of them tend to be hard to wean off.
and these types of medications tend to deplete key nutrients like Magnesium

there are safe reliable vitamin/mineral options for nerve pain, that are no risk to your MC, that would be treating the root cause of the things causing your symptoms
medication can help abate the symptoms but it is not treating the root cause. Because of this I will always encourage non medication approach where possible.
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Post by Gabes-Apg »

This news article came out today

more evidence to be cautious about 'off label' use - (which is the case with your question for Cymbalta)

http://www.ctvnews.ca/health/off-label- ... -1.3296903

Most off-label use of antidepressants is not backed by evidence that the drugs will work as intended, scientists said Wednesday.
Many medications approved for the treatment of depression are prescribed by doctors for other problems such as pain, insomnia or migraine headaches.
But only a small fraction of such "off-label" treatments have been tested for efficacy and side-effects, researchers reported in the medical journal BMJ.

Giving adult medication to children, or in doses different from those tested in clinical trials and specified by drug-makers, are also considered off-label uses.
The study found that about a third of antidepressants are prescribed for conditions other than depression. 
"This is probably the tip of the iceberg," said lead author Jenna Wong, a researcher at McGill University in Montreal, Canada.
"There is a lot of off-label use going on, but we don't have good ways of tracking it," especially when antidepressants are taken to treat other conditions, she told AFP.  

The use of antidepressants -- both off-label and for depression -- has increased sharply in many countries in recent decades.
In the United States, their use shot up almost five fold from early 1990s to the 2005-2008 period, when 11 percent of adults reported taking them in the previous month, according to the US Centers for Disease Control and Prevention.
Women in the U.S. were more than twice as likely as men to take antidepressants.
In Britain, their use increased by nearly seven percent between 2014 and 2015 -- a sharper rise than any other class of drug.
In the study, Wong and colleagues tracked over 100,000 antidepressant prescriptions written by 174 doctors for 20,000 patients in Quebec, Canada between 2003 and 2015.
Overall, 29 percent were given for conditions other than depression.
Scientific data supported only 16 percent of these off-label treatments. 
For the remaining 84 percent, there was either little or no evidence that the medications would work as intended.
In evaluating safety, most consumers focus on whether a drug has been approved by regulatory agencies such as the US Food and Drug Administration (FDA), said Wong.  

"But for physicians and scientists, the greater concern is whether a particular off-label use is scientifically-based or not." 
The study shows that more research is urgently needed on the prevalence and impact of off-label meds, said Daniel Morales and Bruce Guthrie, both researchers at the Dundee Medical School in Scotland.
"Off-label prescribing matters because it is usually -- but not always -- associated with substantial uncertainty about the balance of benefit and harm," they wrote in the BMJ.
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Ann52
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Thanks

Post by Ann52 »

Thanks for all your input. I feel like a zombie on this Cymbalta. The only positive effect is that I sleep better, but hate going through the day feeling like an air head. I am going to call my Primary and ask her to wean me off this.
Ann
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