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Kyleweber

Just diagnosed celiac and terrified of MS

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Hi everyone. First time poster. A few weeks ago I would have never guessed I'd be talking about any of this.

My blood and urine tests have all been positive for celiac. I had a skin biopsy that also pointed towards DH. Endoscopy was yesterday but I was essentially told I have celiac regardless of the outcome.

I just turned 30 and am shocked by all of this because I dont feel that bad. My biggest symptom this whole time has been a loose stool and DH, which showed up once and never came back. No one in my family tree has celiac or any other auto immune issues.

I've accepted that I have celiac and Im prepared for the dieting, but I am absolutely terrified of MS. Is it something I should expect one day? Do the majority of people with celiac develop other auto immune diseases?

I went from thinking "I just have to eat a strict diet" to now thinking that's just the tip of the iceberg. Its got me in a bad place mentally. Is it likely for MS to be in m future?

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MS? Do you mean multiple sclerosis? Although MS is considered an autoimmune condition it's not one I have heard of in connection with Celiac Disease but I could be wrong. I'm not sure why you went straight there unless MS runs in your family. The most common autoimmune diseases that develop in celiacs are are other intestinal diseases like Chrones, IBS and colitis as well as thyroid disease, lupus, and diabetes.

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4 hours ago, Kyleweber said:

No one in my family tree has celiac.

they might and not know....

I know a priest in the UK who was diagnosed with Celiac in his 50's...  he's like 75 now and doing fine...

 

 

of course he's all cuddled up to Jesus and stuff though getting special treatment....

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5 hours ago, Kyleweber said:

Hi everyone. First time poster. A few weeks ago I would have never guessed I'd be talking about any of this.

My blood and urine tests have all been positive for celiac. I had a skin biopsy that also pointed towards DH. Endoscopy was yesterday but I was essentially told I have celiac regardless of the outcome.

I just turned 30 and am shocked by all of this because I dont feel that bad. My biggest symptom this whole time has been a loose stool and DH, which showed up once and never came back. No one in my family tree has celiac or any other auto immune issues.

I've accepted that I have celiac and Im prepared for the dieting, but I am absolutely terrified of MS. Is it something I should expect one day? Do the majority of people with celiac develop other auto immune diseases?

I went from thinking "I just have to eat a strict diet" to now thinking that's just the tip of the iceberg. Its got me in a bad place mentally. Is it likely for MS to be in m future?

If you are having symptoms suggestive of MS it could be that the antibodies are attacking your nervous system or that vitamin levels in certain vitamins are low. I was thought to have MS before diagnosis since I had brain lesions suggetive of it. A spinal tap ruled it out when debris suggestive of the demylination of the mylin sheath was not found. it turned out to be caused by celiac. I would suggest asking your doctor to test your B12 levels. They need to be above 500 not the older suggested level of 250. If low supplementation with sublingual B12 can be helpful but if low enough some doctors will use an injection to bring them up faster. If the issues are caused by nervous system impact be as strict as you can and those will likely resolve in time. You should be as strict as you possibly can and we are here to help you accomplish that.

If you have family members who have MS or symptoms suggestive of that disease do encourage them to get tested for celiac. Not all celiacs have tummy issues so they should be tested even if those are not present. It is advised that all of a diagnosed first degree relatives be tested even if asymptomic.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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13 hours ago, Kyleweber said:

I've accepted that I have celiac and Im prepared for the dieting, but I am absolutely terrified of MS. Is it something I should expect one day? Do the majority of people with celiac develop other auto immune diseases?

If you don't already have other immune disease, you are unlikely to develop them now. The treatment for Celiac disease is a strict gluten free diet, avoiding all cross contamination. Untreated celiac disease leads to other autoimmune disorders. Treated Celiac disease does not lead to other autoimmune disorders or health problems. 

If you have neurological problems (such as anxiety or gluten ataxia) those are likely to improve on a gluten free diet but it can take time. The key is to avoid all cross contamination. 

You should also probably take magnesium, zinc and selenium. 


I take glutamine powder and theanine for my IBS. (See the posts on my profile for more information.)

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I'm not sure I would vouch for  the idea that treated celiac disease does not lead to other autoimmune disorders. For one thing, we now know that the healing of the villi may never be total, even on a strict gluten-free diet. There was an NIH article posted this summer on the forum that showed when more in depth analysis of the villi, more than you would get with the common endoscopy/biopsy used to test for celiac disease, damage persists at a certain level. For another thing, the development of other autoimmune diseases may have been in some stage of process before going gluten-free. But certainly, we can say that a strict gluten-free diet will reduce the chances of developing other autoimmune diseases.

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Hi Kyleweber

I must admit I felt exactly like you around the time of diagnosis as I was exhibiting and had been for some time some very odd 'nerve' type issues.  Waking up with dead arms (pins and needles), muscle twitching, fizzing sensations in my left calf, odd visual disturbances, and other things.  I think for me it was to do with massive vitamin and mineral deficiencies.   The pins and needles were eventually diagnosed as ulnar nerve entrapment, the muscle twitching improved massively once I started taking magnesium supplements and I started supplementing, under a nutritionalist's supervision, vitamin D, B12 sublingual tabs and on my doctor's instructions ferritin.  Ironically I cannot supplement iron anymore for other reasons, but my other levels are good and most of my other symptoms are much improved or gone altogether. 

You may not be having any such symptoms.  But if you are, you will see there are a lot of people on this forum who have and indeed it was undiagnosed coeliac disease and the resultant complications that was the problem - and that sticking to a gluten-free diet and addressing any deficiencies should make all the difference.

Cristiana


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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PS.... these symptoms took a while to clear, months in some cases, and during that time I was very anxious which seems only to exacerbate the issues.   So try not to panic if there isn't an instant fix, these things take time to heal. 

Incidentally I spoke to my nutritionalist that I was concerned about MS and she told me she had had a patient who had been diagnosed with coeliac disease, the doctors having first thought it was MS - but it wasn't. I seem to recall she called coeliac disease The Great Mimicker, because the symptoms can mimic many other disorders.

Also, my consultant told me something that encouraged me.  I was wondering about how coeliac disease would affect lifespan, and he told me he had just diagnosed someone in their nineties!  Since then I've met people of all ages with it.   The key thing now is to concentrate on sticking to a gluten-free diet.  


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

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9 hours ago, cristiana said:

 

You may not be having any such symptoms.  But if you are, you will see there are a lot of people on this forum who have and indeed it was undiagnosed coeliac disease and the resultant complications that was the problem - and that sticking to a gluten-free diet and addressing any deficiencies should make all the difference.

 

 It's just the immune response screwing things up....  once that stops..  it will go away..

I'm not deficient in anything..  yet I've had all these symptoms...  some muscle twitching in my calves,  off balance feeling when it first started, dizziness,   and feeling like I was in a daze / visual issue...

5 months off Gluten and everything has improved or gone away...   still not 100%....     but my tTG levels dropped from 100+ to  13 - 18 when I had them checked for the first time last month....    still have a few months of healing left to do I'm sure...   even up to 2 years...

just be happy when your body is responding to the gluten free diet... because if it doesn't..  then you got stuff to worry about.. 

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I just want to mention that there is a relationship between MS and celiac disease, as it is an autoimmune disease and have any autoimmune disease can increase your risk of having other. Here are some articles on this, but if your MS symptoms are gluten-related then going 100% gluten-free should greatly reduce your risk of getting MS, as well as other autoimmune diseases:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/multiple-sclerosis-and-celiac-disease/

Celiac disease does attack the nervous system in some who have it:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

Also, you mention that nobody else in your family has celiac disease, however, your direct relatives have an ~44% chance of also having it, and now that you've been diagnosed you may want to mention this to them, as many people don't have any symptoms, which was true in your case.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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2 hours ago, Scott Adams said:

I just want to mention that there is a relationship between MS and celiac disease, as it is an autoimmune disease and have any autoimmune disease can increase your risk of having other. Here are some articles on this, but if your MS symptoms are gluten-related then going 100% gluten-free should greatly reduce your risk of getting MS, as well as other autoimmune diseases:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/multiple-sclerosis-and-celiac-disease/

Celiac disease does attack the nervous system in some who have it:

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/

Also, you mention that nobody else in your family has celiac disease, however, your direct relatives have an ~44% chance of also having it, and now that you've been diagnosed you may want to mention this to them, as many people don't have any symptoms, which was true in your case.

Thank you for this. These are the articles that got me concerned about MS in the first place.

Can you shed any light on the likelihood of developing MS after a celiac diagnosis? Is it common? Seems most of these articles focus on people with MS who then later discover they have celiac rather than celiac patients later developing MS. 

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It isn't common, but you would be more likely than someone who does not have an autoimmune disease. Gluten ataxia is more common. But the good news is that gluten ataxia can go away on a gluten-free diet. 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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5 hours ago, Kyleweber said:

Thank you for this. These are the articles that got me concerned about MS in the first place.

Can you shed any light on the likelihood of developing MS after a celiac diagnosis? Is it common? Seems most of these articles focus on people with MS who then later discover they have celiac rather than celiac patients later developing MS. 

 

Ms is rare (I am going from my google search) at about 300 per 100,000. Of those about 11% also have celiac. So the rate of people with MS and Celiac is about 30 per 100,000. I don't think you have mentioned having any symptoms at all so far besides the celiac diagnosis. 

Likely how it works is if someone has a number of symptoms on a gluten free diet they are more likely to have another autoimmune disorder as well as celiac disease. If they have no symptoms they could still have another autoimmune disorder but it is less likely. 


I take glutamine powder and theanine for my IBS. (See the posts on my profile for more information.)

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6 hours ago, ch88 said:

 

Ms is rare (I am going from my google search) at about 300 per 100,000. Of those about 11% also have celiac. So the rate of people with MS and Celiac is about 30 per 100,000. I don't think you have mentioned having any symptoms at all so far besides the celiac diagnosis. 

Likely how it works is if someone has a number of symptoms on a gluten free diet they are more likely to have another autoimmune disorder as well as celiac disease. If they have no symptoms they could still have another autoimmune disorder but it is less likely. 

Thanks for walking me through that. I really appreciate it. That goes for everyone who has taken the time to comment.

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On 12/5/2020 at 11:44 PM, Kyleweber said:

Hi everyone. First time poster. A few weeks ago I would have never guessed I'd be talking about any of this.

My blood and urine tests have all been positive for celiac. I had a skin biopsy that also pointed towards DH. Endoscopy was yesterday but I was essentially told I have celiac regardless of the outcome.

I just turned 30 and am shocked by all of this because I dont feel that bad. My biggest symptom this whole time has been a loose stool and DH, which showed up once and never came back. No one in my family tree has celiac or any other auto immune issues.

I've accepted that I have celiac and Im prepared for the dieting, but I am absolutely terrified of MS. Is it something I should expect one day? Do the majority of people with celiac develop other auto immune diseases?

I went from thinking "I just have to eat a strict diet" to now thinking that's just the tip of the iceberg. Its got me in a bad place mentally. Is it likely for MS to be in m future?

Kyleweber,

See this thread (and my latest reply/response) it was to someone with Nerve issues....but I don't have time to rewrite it right now...

And this research....

https://pubmed.ncbi.nlm.nih.gov/23861280/

I hope this is helpful but it is not medical advise.

Posterboy,

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