Thanks, Tex.

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Sheila
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Thanks, Tex.

Post by Sheila »

My youngest son has been having all the symptoms of MC for quite some time. He is very aware that his grandmother and I both had MC and undoubtedly, celiac disease. He wasn't gluten compliant all the time and his symptoms got worse and worse. I bought him your book and, after reading it, he stopped eating gluten completely.

His GI doc didn't take biopsies during his colonoscopy and he doesn't want to have another one. He has been gluten free for about six months (after reading your book :-) with some recent improvement of symptoms. He has been taking LDN for about 4 months, as well. He recently decided to do Enterolab testing and his only intolerance is gluten, a 12. I'm assuming the number was much higher before he stopped gluten. He also had the genetic test and the result: HLA-DQB1*02:02 and HLA-DQB1*02:01.

He is the third generation with (probable) MC and double gluten intolerance and/or celiac genes. When I had my old 23andme genetic tests evaluated recently, several genes for Crohns were found. I wonder if the same genetic predisposition causes MC?

Thanks again, Tex. Your book is an invaluable resource.

Sheila W

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Post by tex »

Hi Sheila,

You are most welcome, but you deserve all the credit for inspiring him to read the book. Hopefully he will stick with his decision, and that change will ensure that he will have much better long-term health.

You also inspired me to look up that particular gene combination in our database of test results. What I found is (IMO) very interesting.

I found 5 members who had that combination of genes — 2 men and 3 women.

None of their anti-gliadin scores were particularly high.

Only 1 of them had more than 2 other food sensitivities (according to the test scores). All 5 were sensitive to casein. Both men had no other food sensitivities (other than gluten and casein). One woman was sensitive to yeast, another was sensitive to eggs, and the other was sensitive to both eggs and soy (in all 3 cases this was in addition to gluten and casein).

2 of the 5 had a very difficult time reaching remission (but they did reach remission), 1 is much better, but still has D, and I'm not sure about the other 2.

What makes this interesting is the fact that we know that those who have either double DQ 1 or double DQ 3 genes tend to have many food sensitivities. So I'm kind of surprised to see that those who have double DQ 2 genes seem to be an exception to that rule.

So hopefully your son will never develop any additional food sensitivities if he sticks to a GF diet (because avoiding all traces of gluten should prevent leaky gut).

I'm not sure if there is any association between genes regarding Crohn's disease and MC, but if I recall correctly, my 23andme results turned up several Crohn's genes, also. I'm just guessing here, but I have a hunch that MC genetics are not even on the radar at 23andme (or anywhere else, other than EnteroLab).

And you're surely correct that his anti-gliadin result would have been higher if he had ordered the test before adopting the diet. Good for you for convincing your son to be proactive about his health. That may turn out to be a priceless gift, in the long run.

Tex
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Post by Sheila »

Interesting, Tex. Chris is definitely having a tough time reaching remission. He tried Entocort for about 6 weeks and it didn't help at all with symptoms. His job is stressful and that doesn't help.

Chris does react when he eats dairy but Enterolab indicated no intolerance. He avoids dairy for the most part because of discomfort. He was born with intolerances to many foods and was limited to rice cereal, pears, lamb and soy milk for his first year or two. He also had asthma and seasonal allergies which he has outgrown.

Your book was what convinced him he had to be serious about eliminating gluten. Of course, I'd been saying that for the past year............in one ear and out the other.

I'm still in remission but will have to change my diet from modified Paleo due to diverticulitis. Bummer.

Thanks again,

Sheila W
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Post by tex »

Everyone is lactose intolerant when they have enteritis, so Chris's milk issue may fade away after the inflammation is under control. He might be able to tolerate lactose-free milk in the mean time. I tried it one time many years ago, but to me it tasted like sour milk, so I couldn't see any reason to drink it. But maybe it only tastes that way to me.

If lactose is the problem in dairy products, he should be able to tolerate aged cheeses. They're loaded with casein, but they contain only very small amounts of lactose. And since we can't produce antibodies to lactose (because it's a sugar, not a protein), small amounts shouldn't be a problem (assuming that he's not sensitive to casein). He would need to avoid soft cheeses though (such as cottage cheese) because they contain too much lactose for someone who is lactose intolerant.

Good luck with your diet changes. I hope that goes smoothly.

Tex
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Post by Chemgirl »

I can speak to the Crohn's connection.

I have no family history of MC, but I do have several relatives with Crohn's disease.

I also have 2 aunt's who are celiac, so there's that.

There must be something going on with multiple genes. We just don't know enough about it yet.
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Post by Gabes-Apg »

Sheila
you have done all you can do, share the knowledge. what Chris does with that knowledge is up to him.

as he listens to his body and learns what he can handle stress wise, food wise etc then it will be up to him to figure out his management plan.


hard to know if there was family history of MC, as we all know well, it is hard for some to get accurate diagnosis.
I do know that digestion issues was evident in grandparents on both sides, and my mother has crohns.
Genes is one factor, we all have genetic mutations and imbalances. it is the process of why they are triggered into a chronic illness that has many elements.

some further recent reading, i am sure that for me, MC is a symptom of major nutritional imbalances, my immune system and adrenal system in melt down from years of nutritional deficiencies/imbalances/excess toxins and metals and due to things like the Pyloria my bodies inability to cope with stress (which depletes key nutrients very quickly). leaky gut has been there since childhood. (MC didnt cause the leaky gut)
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Post by Sheila »

I agree with you, Gabes, when it comes to nutritional deficiencies causing us a lot of grief. Years of malabsorption have to have a huge impact and likely trigger those nasty auto-immune genes. I was told I had IBS/colitis most of my life.

I've been on a pretty strict modified Paleo diet for years and haven't had a cold or been sick during all that time. Due to a diverticulitis attack, I added food I've been avoiding including legumes, nightshades and dairy. Today I started with a head cold. WTF?? Because of Sjogrens I shouldn't take decongestants that will just make SS symptoms worse.

It's always something.

Sheila W
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Post by tex »

Sheila,

I've been thinking about your last post in this thread. Your observation is very interesting, to say the least. It's almost as if your immune system has been very effective at preventing viruses for years, presumably because your digestive system (and therefore the other systems in your body) was working smoothly, so your immune system could direct it's full attention to disease prevention. But as soon as your altered diet allowed the reintroduction of one or more pro-inflammatory items, your immune system immediately became side-tracked by the food sensitivity issues, and failed to notice the virus becoming established.

And yet we know that in the longer term, the immune system tends to be quite effective at preventing viral infections during periods of chronic MC reactions. At least this seems to be true in most cases, because many/most of us report few to no viruses and reduced pollen allergies, etc., during MC reactions. Apparently there's a transition period where the immune system is off balance, after being caught by surprise by food allergens that it thought were long-gone. Or maybe something else is going on. I'm just thinking out loud here.

Tex
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Post by Gabes-Apg »

Tex,
Some recent reading about my high unbound copper issue, there is a strong connection of deficiencies/imbalances on the immune system and T-cell reactions,

My pondering is, the combo of imbalances and deficiencies, puts mega strain on immune system and methylation cycle. When the inflammation gets too much, things like MC occur.

Stress is known to deplete zinc and magnesium, maybe that's why people have major flares when there is stressful/traumatic event.
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Post by Sheila »

Hmmm. Makes sense, Tex. I haven't had legumes, nightshades, so many grains, and so much dairy in a long time. The dairy is because of Christmas and a homemade cheesecake. :oops: After years of a very limited diet, heavy on protein, my body could very well be in shock. Thanks for your input. I see my GI doc tomorrow about the diverticulitis. He's very open to input re MC/celiac and my diet but he doesn't believe it works for others with MC. He won't be any help with diet.
I think I may have had the diverticulitis attack because I've been overdoing nuts. It's hard to keep my weight stable on the Paleo diet. I started eating a lot of nuts because they're easy and filling, 3/4 C a day of almonds and pistachios. Lazy on my part.
I'm going back to Paleo tomorrow and hope for the best. I appreciate your help, Tex.

Sheila W
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Post by tex »

Sheila,

I can't handle nuts either, but I eat a fair amount of nut butters (almond and cashew). They're much easier to digest. A frozen banana with a gob of almond or cashew butter smeared on top is the closest thing to desert that I eat these days. But I eat them as snacks, not as desert.

There's a lot of disagreement about whether most of the diet recommendations made regarding diverticulitis actually help. Apparently most of those recommendations were originally based on guesswork and assumptions, rather than proven science. The inflammation associated with diverticulitis is apparently the same type associated with MC — T cell infiltration into the epithelia of the colon. So surely food sensitivities would exacerbate diverticulitis symptoms.

I hope you can settle on a diet that works well for both issues in the long run.

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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