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6 hours ago, Another PO'ed Celiac said:

Just thought I'd post an update in case people are curious.  I got the results of genetic testing.  I do have the 'Celiac gene' but it looks like I also have HFE hemochromatosis.  This actually explains a lot... scarily a lot.  Not sure where I'm going from here.  Still frustrated beyond belief.  NOT doing the blood draining treatment thing.  I don't know how advanced my case is yet.  I have more testing to do when I'm able to tolerate it.  Just fed up and don't want to be messed with anymore.  I've got POTs and am showing more and more heart issues meaning my stimulants will be taken away and I'll be back to sleeping my life away.  Not sure what the point of anything even is after that.  Funny thing is that Social Security Disability has picked this time for a review and somehow thinks I'm better and capable of 'some work'...now...at this time when I'm sicker than I've ever been.  How is that for irony? 

Seriously F the damned SS stuff. I lost my SSI at the end of August. I got transferred to another program, lost medicaid, had to refile and argue for 2 hours to get back on food stamps. AND they expect me to pay $698.95 for my medications now when my income is just $800 a month -_- If not for my family I would be dead or under a bridge. I mean really I get billed monthly for $750 in rent and $200 in utlitlites, I have my parents help with it. I feel like a leech on society sometimes. My only blessing and usefulness in life is helping others with this disease by giving advice here, cooking for people, and making great moist and healthy baked goods, almond butters, and dairy free thai fried ice so people can enjoy food again.........I just wish to be more useful and feel like I am contributing more then it takes for me to live lol.....enough ranting just saying your not alone, try finding a outlet to make yourself useful and perhaps try sell stuff at a local farmers market .....like it is the only way I have managed to keep food in the house with the side income. Other wise I would be where I was 2 years ago.....starving and eating acorns, and local flora. NOTE do not report any side income and make sure it is off the books, do not keep it in a account and deal with cash only or a paypal account and debit card under another family member.

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2 hours ago, Ennis_TX said:

My only blessing and usefulness in life is helping others with this disease by giving advice here, cooking for people, and making great moist and healthy baked goods, almond butters, and dairy free thai fried ice so people can enjoy food again.........I just wish to be more useful and feel like I am contributing more then it takes for me to live lol

I just wanted to say that I find your posts here very helpful. I’m interested in the neurological aspects of gluten sensitivity/celiac because my symptoms have been mainly neurological (terrible chronic migraines, anxiety, panic attacks, dizziness etc.) and a blood relative of mine had epilepsy. So tbh I’m scared of this kind of symptoms and don’t want to underestimate them. And some of your posts really helped me understand how celiac can manifest itself neurologically.. your mind turning against you etc. I’m really sorry you had to go through all that but find your advice useful.

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On 9/10/2017 at 7:21 AM, Another PO'ed Celiac said:

Just thought I'd post an update in case people are curious.  I got the results of genetic testing.  I do have the 'Celiac gene' but it looks like I also have HFE hemochromatosis.  This actually explains a lot... scarily a lot.  Not sure where I'm going from here.  Still frustrated beyond belief.  NOT doing the blood draining treatment thing.  I don't know how advanced my case is yet.  I have more testing to do when I'm able to tolerate it.  Just fed up and don't want to be messed with anymore.  I've got POTs and am showing more and more heart issues meaning my stimulants will be taken away and I'll be back to sleeping my life away.  Not sure what the point of anything even is after that.  Funny thing is that Social Security Disability has picked this time for a review and somehow thinks I'm better and capable of 'some work'...now...at this time when I'm sicker than I've ever been.  How is that for irony? 

So sorry to hear you're having such problems.  My heart goes out to you. I remember what it was like trying to sort things out.  I had a horrible time before I figured out the connection.  I felt like I belonged to the "disease of the month" club.  The best advice I can give is to correct nutritional deficiencies.  Your car won't run properly if you don't put the right fuel in it.  It's the same with your body.   Your body may not be working right because it isn't absorbing enough of the nutrients it needs.

Celiac Disease causes malabsorption which results in malnutrition.  Even without overt symptoms like diarrhea or wasting away, vitamin and mineral deficiencies can occur.  

Thiamine (B1) deficiency is tied to POTS and heart palpitations.

https://www.ncbi.nlm.nih.gov/pubmed/28531358

Vitamin D levels influence the HFE hematachromatosis.  

https://www.ncbi.nlm.nih.gov/pubmed/3838288

Vitamin A deficiency is connected to IgG4 deficiency.

https://www.ncbi.nlm.nih.gov/pubmed/18082039

Vitamins A and D are fat soluble vitamins.  Celiacs often have problems absorbing fats.  Omega 3 fats are required for proper brain function.  Fish oil or flax seed oil will help.   Thiamine is one of eight B vitamins that all work together and should all be supplemented together.  Niacin deficiency can cause lethargy, distorted thinking, and anxiety.  Without Niacin, the cells can't produce energy to function, whether it's a muscle cell or a brain cell.  

B 12 works with the other B vitamins.  Just supplementing one may not be as advantageous as supplementing all the B vitamins together.  

If you're not absorbing nutrients well, supplementing temporarily may be necessary.  

I really hope you feel better soon.  

Kitty

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Thank you to all of you with advice and encouragement because I have read each part and it's helped me try to figure this mess out just a little bit more at a time.  I thought I'd post a quick update to this ongoing drama in case anyone was interested or curious like me.  I am actually more confused than ever after meeting with my genetic counselor.  Do I have this blasted disease or not?  I'm not trying to be in denial, but I also don't want to live this way if I don't actually have to!  Which really is extremely important to me.  It's literally killed my social life and between what I can't eat due to Celiac, and can't eat due to various fructose and other food sensitives and the sensitivities caused by my gastric sleeve (not to mention that I'm picky already and there are so many foods you couldn't even pay me to put in my mouth and if they were the only ones available, yes I'd likely starve)...my food list is extremely small and depressing.  And even just having my family around eating things I can't have when I constantly request that they keep it out of the house is impossible.

The Genetic Counselor I met with is very reputable and experienced and I felt like he really helped me understand what things I need to be aware of and what are not a concern.  This was his response to my question about Celiac disease:  "There are two SNPs and one genoset (out of a total of 56 SNPs tested for Celiac disease) that have been associated with an increased risk of developing Celiac disease.  That said, the two SNPs that you have occur more frequently in the population than Celiac disease does, so it seems very unlikely that they would cause that condition on their own. It might be worth talking to the doctor who diagnosed you to get more clarification about how that diagnosis was made."

They did blood work and a biopsy, which showed a Marsh score of 3A but as I have been learning, the biopsy is pretty much worthless since we discovered that I am lactose intolerant (which actually did show up in my genes as a pretty high number and since avoiding the stuff, I haven't had even 1 round of diarrhea!)  So now it's got me wondering about a false positive on blood work and what things can cause that and we should start looking at.  I had recently been through quite a bit of trauma at that time so maybe it just set my system off attacking everything and now that it's calmed down things will be different.  No one else in my family has Celiac which seems rather odd as one of my parents at least should have it which would be how I got it but they tested negative as did my kids! 

I swear I'm just a medical mystery that's bound to end up in a medical journal one of these days!

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17 minutes ago, Another PO'ed Celiac said:

Thank you to all of you with advice and encouragement because I have read each part and it's helped me try to figure this mess out just a little bit more at a time.  I thought I'd post a quick update to this ongoing drama in case anyone was interested or curious like me.  I am actually more confused than ever after meeting with my genetic counselor.  Do I have this blasted disease or not?  I'm not trying to be in denial, but I also don't want to live this way if I don't actually have to!  Which really is extremely important to me.  It's literally killed my social life and between what I can't eat due to Celiac, and can't eat due to various fructose and other food sensitives and the sensitivities caused by my gastric sleeve (not to mention that I'm picky already and there are so many foods you couldn't even pay me to put in my mouth and if they were the only ones available, yes I'd likely starve)...my food list is extremely small and depressing.  And even just having my family around eating things I can't have when I constantly request that they keep it out of the house is impossible.

The Genetic Counselor I met with is very reputable and experienced and I felt like he really helped me understand what things I need to be aware of and what are not a concern.  This was his response to my question about Celiac disease:  "There are two SNPs and one genoset (out of a total of 56 SNPs tested for Celiac disease) that have been associated with an increased risk of developing Celiac disease.  That said, the two SNPs that you have occur more frequently in the population than Celiac disease does, so it seems very unlikely that they would cause that condition on their own. It might be worth talking to the doctor who diagnosed you to get more clarification about how that diagnosis was made."

They did blood work and a biopsy, which showed a Marsh score of 3A but as I have been learning, the biopsy is pretty much worthless since we discovered that I am lactose intolerant (which actually did show up in my genes as a pretty high number and since avoiding the stuff, I haven't had even 1 round of diarrhea!)  So now it's got me wondering about a false positive on blood work and what things can cause that and we should start looking at.  I had recently been through quite a bit of trauma at that time so maybe it just set my system off attacking everything and now that it's calmed down things will be different.  No one else in my family has Celiac which seems rather odd as one of my parents at least should have it which would be how I got it but they tested negative as did my kids! 

I swear I'm just a medical mystery that's bound to end up in a medical journal one of these days!

The Gene test is a hit and miss many have celiac and not the gene and vise verse, frankly the human genome is still being studied and quite the mystery how some stuff works with some and not with others. Hince why we do not have the 100% option to use gene therapy to cure celiac yet, though I joke about it one day.

How does you having lactose intolerance phase into your not having celiac....quite the opposite. The damage caused by celiac often causes lactose intolerance as the enzymes are in part produced by the tips of the villi....if you have damaged intestines these are the most damaged. SO many of use with celiac disease develop lactose intolerance. Hell I got my lactose issues diagnosed over 6 years before my celiac. And Diarrhea was never a issue with me in my teens, or as a young adult, heck it was not until 2 years after going gluten free that I saw D as a new symptom to a accidentally CC. Before that I actually had chronic constipation and thought it was normal not going to hte bathroom but once every 2-11 days (note part of this leads to a kind of toxicity build of as the stuff sits in your gut).

Biopsy is almost always accurate the blood test can be iffy, if you got both...well you just got both barrels of the gun and well, you have it.

I just had the most wonderful time at a gluten free expo, Imagine a food expo where nothing gluten is allowed in the door, there are food cards on each table that tell you what allergens are present in the food there were 4 bakeries there, 5 companies with pizza, various muffins, fries, sauces, chips, instant meal, rice, cakes, baking mixes, etc all gluten free. Samples of everything, coupons for discount, etc, >.< with my corn, dairy, meat, yeast, issues I only found like 3 things I could eat but still new ones. I was there as a ambassador for the Nima Sensor, it is a portable gluten test kit that you can take when you want to eat out. I met some other ambassadors there who talked about using it when they ate out to confirm food was gluten free. One talked about going to chick fil-a and eating the french fries and grilled nuggets after testing them and was so happy since they had not eaten there in over 5 years apparently. She also talked about eating at twinpeaks, chilis, and some other place I do not even recall. Point is there are now more options out there and testing kits that allow to eat out without risking getting sick since you can test your food for the poison before hand.

 

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Hello again :)

1 hour ago, Another PO'ed Celiac said:

They did blood work and a biopsy, which showed a Marsh score of 3A but as I have been learning, the biopsy is pretty much worthless since we discovered that I am lactose intolerant

I'm not sure where you've read this or perhaps if you've been told this by someone but it's not true. The biopsy is not rendered useless by finding out you have lactose intolerance. Far from it. 

Lactose intolerance can be a symptom of the intestinal damage, it's not a cause of it. If anything the lactose intolerance strengthens the case for avoiding gluten. 

It does help to be careful where you draw your information from. There are a lot of bogus sites which put forward dubious theories or seek to promote particular products. My advice would be to try to stick to the university health sites which use peer reviewed science for their sources. 

"I swear I'm just a medical mystery that's bound to end up in a medical journal one of these days!"

To recap. You have a positive celiac blood test. You have a positive biopsy. You've been told you carry the celiac genes. You have POTS and various other symptoms consistent with celiac. From the outside there doesn't appear to be a mystery here? 

Please reconsider the assumption that you've made that the diagnosis is incorrect. I believe you've made this on an imperfect understanding of what celiac is and how it manifests. It's not primarily intestinal in the majority of cases. The symptoms you've described are consistent with those experienced by celiac patients who are ingesting gluten. The links I posted to you at the beginning of this thread will tell you more. 

Best of luck :)

 

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7 hours ago, Another PO'ed Celiac said:

...  I am actually more confused than ever after meeting with my genetic counselor.  Do I have this blasted disease or not?  I'm not trying to be in denial, but I also don't want to live this way if I don't actually have to!  Which really is extremely important to me.  It's literally killed my social life and between what I can't eat due to Celiac, and can't eat due to various fructose and other food sensitives and the sensitivities caused by my gastric sleeve (not to mention that I'm picky already and there are so many foods you couldn't even pay me to put in my mouth and if they were the only ones available, yes I'd likely starve)...my food list is extremely small and depressing.  And even just having my family around eating things I can't have when I constantly request that they keep it out of the house is impossible.

The Genetic Counselor I met with is very reputable and experienced and I felt like he really helped me understand what things I need to be aware of and what are not a concern.  This was his response to my question about Celiac disease:  "There are two SNPs and one genoset (out of a total of 56 SNPs tested for Celiac disease) that have been associated with an increased risk of developing Celiac disease.  That said, the two SNPs that you have occur more frequently in the population than Celiac disease does, so it seems very unlikely that they would cause that condition on their own. It might be worth talking to the doctor who diagnosed you to get more clarification about how that diagnosis was made." ...

Approximately 30% of the USA population carry one of the genes for celiac disease.  But only about 1% actually develop celiac disease, which can happen at any point in life., young, old or in-between.  Having the genes does not mean you have celiac disease, it means your immune system may turn celiac at some point.  There is also an increased risk of celiac disease with gastric bypass surgery.  A couple of people have posted about developing celiac disease after having gastric bypass surgery in the past.

 

Edited by GFinDC

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I'm not sure who might be following this thread anymore but I thought I'd add some more interesting information into the mix.  So because of my constant battles with candida, my immunologist thinks I have chronic mucocutaneous candidiasis which fits as I have struggled with yeast problems for years.  It has also been shown to raise Gliadon antibodies  (here is just one of many studies proving that fact:  https://www.ncbi.nlm.nih.gov/pubmed/19549274).  This fits the pattern of when I have abdominal pain, when I tend to have hormonal problems, when I have more 'brain fog' etc etc.  After I was treated for a month with fluconazole, I felt a lot better.  I should have had my antibodies retested at that time.  Also Celiac is not the only cause of villus atrophy.  I am definitely lactose intolerant (according to my genes, I actually had a 70% chance of being lactose intolerant which is a LOT higher than my chance of Celiac so I highly doubt Celiac would have been the cause of that) and at the time of my biopsy there was a high likelihood of SIBO and/or Candida too.  I responded extremely well to a course of Xifaxan which gives even more credence to my theory.  I am extremely intuitive and I know when something just doesn't feel right.  I initially accepted my diagnosis.  I was pissed off as hell about it, but I had accepted it.  Until things began not adding up.  Candida has been known to trigger Celiac too, so it's possible that it was the cause and I may actually still have it despite adequate CMC treatment, BUT...some people who have CMC who get treatment actually see those gliadon antibodies go down as well without a change in diet.  There's a lot there that at the very least casts doubt on the diagnosis.  I also have absolutely NO malnutrition of any kind.  Even with my gastric sleeve surgery you would expect to see SOME malnutrition and my doctors are scratching their heads on that one.  They've tested all kinds of vitamin and mineral levels and even used alternate tests for some of them and still everything shows perfectly normal there.  Throw in the fact that even on strict gluten avoidance nothing changes AT ALL...not even the slightest bit...wouldn't you question your own diagnosis?  

I'll keep you posted as I move through this puzzling journey.  I knew I had something strange and rare that had yet to be discovered!  I really need to learn to listen to my own instincts more as they have yet to ever let me down...while so many doctors do time and time again!

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