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Ruby 8

Chrohns and negative Celiac test

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Hello,

I mean no disrespect to anyone here with Celiac, and don’t want to come off as anyone being overly paranoid about a very real thing here. But, I would love some insight. I have chrohns disease which is thankfully “in remission” thanks to Stelara. I’m still having other autoimmune issues, as my rheum calls it. My ANA has been increasing the past few years and is now 1:2560, but negative for the lupus and RA. My GI did the full celiac blood panel twice and it was negative. She did an endoscopy with lots of biopsies and my stomach samples showed inflammation and small intestine was metaplasia. It was decided that was my chrohns.  I’m still anemic and haven’t GI bled in years. I did 8 weeks of the 50K weekly vitamin d with no increase in my levels. My GI system feels excellent but fatigue and body/joint aches have been a huge huge issue. My friend is urging me to stop gluten so I’m considering it but I feel like if I’m not celiac, then why? So, in a long shot, did anyone get negative on all tests? Anyone happen to get lower ANA testing after going gluten free? I know there’s no harm in trying, but as my GI told me, let’s not add another diagnosis to your list if we don’t need to. 

 

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Hi Ruby 8,

Welcome to the forum! :)

We have had forum members with celiac who tested negative on the blood work.  Actually, most anyone with celiac disease should test negative if they are eating gluten-free for long enough.  There are a few exceptions (refractory celiac), but those are rare cases.

Then there are some people who just don't make much of any IgA antibodies.  So those people automatically show negative on the various IgA antibody tests.  There seems to be a higher percentage of non-IgA makers in the celiac community than at large.

I am on 50 K units of vitamin D weekly myself.  And have been for over a year.  Vitamin D seems to be a problem for some of us.  B-vitamins can be problematic also.

Hopefully your doctor had you do a proper gluten challenge before your celiac testing?  That would be eating a small amount of gluten daily for 12 weeks to give the blood antibodies time to show, or for 2 weeks for the endoscopy with biopsies.

There is often a screening test done for celiac disease called the ttg IgA.  If you are one of the IgA deficient people, it doesn't work.

There is also a full celiac panel which includes more antibody tests.  The EMA, and DGP IgG are included in it.

If you have done the gluten challenge and flunked all the testing, the final test is to try the gluten-free diet for 6 months and the fructose-free diet and see if it helps.  One gotcha with celiac testing is that there are more people who have NCGS (non-celiac gltuen sensitivity) than there are with celiac.  But there are no tests for NCGS.  So those NCGS people test as not being sick on celiac tests even though they are suffering symptoms.

Let your body tell you the truth and let the MD's play golf. :) 

Edited by GFinDC

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Consider going gluten free.  Well......even grain free.  There is a diet called the Autoimmune Paleo Diet that has been around for a few years.  You go on a super strict diet for a few weeks and then add foods back in.  Basically it does not encourage processed foods.  Many people have had success with this diet.  So, Scripps In San Diego did a tiny study involving IBD patients (Crohn’s and Ulcerative Colitis).  With six weeks or so they achieved over a 70% remission rate.  Again, the study was tiny (who wants to fund food?) but it might be worth investigating. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

The AIP diet is gluten free too.  

Edited by cyclinglady

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Thanks you two! I’ve been eating gluten every day of my 29 years ha. My thing is, every possible test was negative so to me, I don’t have it. I agree with my Dr that anytime you test negative for something it’s a good thing. Chrohns is enough. She tested me so many times because of the anemia and vit D issue. Did your vitamin D level ever into normal range now DC? Thanks for reminding me of the AI protocol. Back when I was sick I read about but I need to look again. I guess there’s no harm if seeing if it improves my bloodwork but thought I’d ask. I didn’t want to be a fad dieter ;)  Hm I do wish there were more studies on autoimmune diseases.

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You are welcome Ruby!  Yes, my vitamin D has improved, but not enough for the doc to take me off the RX pill yet.  I take the 50k once a week and also now take 1K pill daily.  I read somewhere that taking a smaller amount daily has more effect than a large pill infrequently.

Here is a short article about NCGS.

https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

The chances of having NCGS are higher than those of having celiac disease.  But it is mostly not understood at this point.  This article by Mayo Clinic reviews NCGS and possible causes.

https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/if-its-not-celiac-disease-what-is-it/mac-20430109

I should have said try the FODMAP free diet above, not fructose free.

This article in Today's Dietician talks about FODMAPS and reducing them in the diet to reduce symptoms.

https://www.todaysdietitian.com/newarchives/072710p30.shtml

My younger brother had both Crohn's and celiac disease.  So it is possible to have more than one gut condition at the same time.  Sorry for all the links.  Hopefully they are helpful.

Edited by GFinDC

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5 hours ago, Ruby 8 said:

Thanks you two! I’ve been eating gluten every day of my 29 years ha. My thing is, every possible test was negative so to me, I don’t have it. I agree with my Dr that anytime you test negative for something it’s a good thing. Chrohns is enough. She tested me so many times because of the anemia and vit D issue. Did your vitamin D level ever into normal range now DC? Thanks for reminding me of the AI protocol. Back when I was sick I read about but I need to look again. I guess there’s no harm if seeing if it improves my bloodwork but thought I’d ask. I didn’t want to be a fad dieter ;)  Hm I do wish there were more studies on autoimmune diseases.

I do not have Crohn’s, but my niece does.  It sounds like your Crohn’s could be still flaring/simmering.  It can affect joints and causes fatigue like so many other autoimmune disorders (AI). I know you are feeling better gut wise, but maybe Crohn’s is the root cause of your current issues (you are still anemic and low on Vitamin D).  From what I have read, food can heal or hurt.  If you can find a way to calm down your immune system without adding or trying another prescription drug, that would be amazing! 

As far as antibodies and lab results, I can share that both my thyroid and my Anti-gliadin (DGP IgA) antibodies have never been in the normal range.  Yet my last intestinal biopsy revealed a healed small intestine and my thyroid is no longer enlarged and my thyroid nodules are gone.  I am not sure using antibodies (which were designed to help diagnose autoimmune) are that good for monitoring.  At the very least, this has been discussed in the celiac medical community.  The are used because they are the only non-evasive “tool in the tool box.”  Perhaps, this applies to other AI-related antibodies.

For me, how I feel is my best gauge.  

If you live in the Northern hemisphere, consider getting your vitamin D from the sun now that winter is over.  

Here is the latest about vitamin 😧

https://www.sciencenews.org/article/vitamin-d-supplements-lose-luster

 

Edited by cyclinglady

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Good articles. Vitamin D is interesting, both my Drs are very into it. They say their AI patients have less symptoms when their level is in the 50s. I go out in the sun a lot too! I might add a daily. I also think my chrohns is still simmering, which is why I’m skeptical that gluten is the problem. They’ll likely add 6MP soon. So, i might give diet a shot, maybe the sensitivity thing exists. I’m very fact and proof based, though. I did enjoy reading the studies. I hope your brother is doing well, and if not I’m so sorry. I lost a friend because of her chrohns. I try not to think about it because it’s rare that happens, but also makes me appreciative of how far medicine has come. 

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9 hours ago, Ruby 8 said:

Thanks you two! I’ve been eating gluten every day of my 29 years ha. My thing is, every possible test was negative so to me, I don’t have it. I agree with my Dr that anytime you test negative for something it’s a good thing. Chrohns is enough. She tested me so many times because of the anemia and vit D issue. Did your vitamin D level ever into normal range now DC? Thanks for reminding me of the AI protocol. Back when I was sick I read about but I need to look again. I guess there’s no harm if seeing if it improves my bloodwork but thought I’d ask. I didn’t want to be a fad dieter ;)  Hm I do wish there were more studies on autoimmune diseases.

I do not have Crohn’s, but my niece does.  It sounds like your Crohn’s could be still flaring/simmering.  It can affect joints and causes fatigue like so many other autoimmune disorders (AI). I know you are feeling better gut wise, but maybe Crohn’s is the root cause of your current issues (you are still anemic and low on Vitamin D).  From what I have read, food can heal or hurt.  If you can find a way to calm down your immune system without adding or trying another prescription drug, that would be amazing! 

As far as antibodies and lab results, I can share that both my thyroid and my Anti-gliadin (DGP IgA) antibodies have never been in the normal range.  Yet my last intestinal biopsy revealed a healed small intestine and my thyroid is no longer enlarged and my thyroid nodules are gone.  I am not sure using antibodies (which were designed to help diagnose autoimmune) are that good for monitoring.  At the very least, this has been discussed in the celiac medical community.  The are used because they are the only non-evasive “tool in the tool box.”  Perhaps, this applies to other AI-related antibodies.

For me, how I feel is my best gauge.  

If you live in the Northern hemisphere, consider getting your vitamin D from the sun now that winter is over (I do not mean to stop supplementing if you need to do so).  

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I do not have Crohns but I have  Celiac and Ulcerative Colitis, Thing is issues like Crohns and UC normally have different trigger foods for different people. I did a elimination diet only eating 3-5 whole unprocessed foods for a week rotating a new on one day then out etc. You keep a diary and find what foods make you feel worse and build your diet. I found my UC flared to fructose, carbs, soy, some spices, and some other things that I had previously eliminated when exposed flare it also (dairy and gluten). With damaged intestines and Autoimmune disease your very prone to other food intolerances and sensitivities.
https://www.wikihow.com/Keep-a-Food-Diary
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

I actually ended up going paleo with Keto Macros by building my OK foods and my No foods diet.  But last scope showed both my UC and Celiac in remission without taking any RX, though I do treat the UC with herbal supplements. 

Stuff like Aloe Vera Juice, Slippery Elm, and Marshmallow Root can coat and sooth damaged intestines. 
https://www.herbwisdom.com/herb-marshmallow.html
https://www.herbwisdom.com/herb-slippery-elm.html

Other vitamins issues with damaged guts can include the full spectrum of B-vitamins (many work synergistically), Magnesium, Iron, Vitamin A, D, C, and if your having bleeding issues vitamin K can help with clotting.  Supplementing in excess with some is needed as your gut is practically a bucket with holes.

I am not a doctor but figured some of this that I have picked up might help with the situation as another tool in the toolbox.

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22 hours ago, Ruby 8 said:

Hello,

I mean no disrespect to anyone here with Celiac, and don’t want to come off as anyone being overly paranoid about a very real thing here. But, I would love some insight. I have chrohns disease which is thankfully “in remission” thanks to Stelara. I’m still having other autoimmune issues, as my rheum calls it. My ANA has been increasing the past few years and is now 1:2560, but negative for the lupus and RA. My GI did the full celiac blood panel twice and it was negative. She did an endoscopy with lots of biopsies and my stomach samples showed inflammation and small intestine was metaplasia. It was decided that was my chrohns.  I’m still anemic and haven’t GI bled in years. I did 8 weeks of the 50K weekly vitamin d with no increase in my levels. My GI system feels excellent but fatigue and body/joint aches have been a huge huge issue. My friend is urging me to stop gluten so I’m considering it but I feel like if I’m not celiac, then why? So, in a long shot, did anyone get negative on all tests? Anyone happen to get lower ANA testing after going gluten free? I know there’s no harm in trying, but as my GI told me, let’s not add another diagnosis to your list if we don’t need to. 

 

Ruby8,

I didn't have Chron's either ..but I have had friends who have had it.

I find I am always doing research for others ... and you find when you look...often new(er) research has  not worked it's way down to a clinical level.

It can take 10 or 15 years for clinician's office to incorporate new research.

Taking Niacin or Niacin(amide) the non-flushing form of the vitamin will/can help your Chrons per this new research. Here is the nicely worded article on it.

https://medicalxpress.com/news/2014-01-bolster-fiber-role-colon-health.html

here is the original abstract ...a little more technical but compact..

https://www.ncbi.nlm.nih.gov/pubmed/24412617

at least in a subset of Chrons' patients' taking Niacin (100mg) with meals will help your genetic tendency to burn through Niacin.

it is known as a Vitamin Dependency....not a Vitamin deficiency.

they have shown approx. 5 years quoting the article on fiber and it's connection to colon health

"They've shown that a receptor doctors already activate with mega-doses of niacin to protect patients' cardiovascular systems also plays a key role in preventing colon inflammation and cancer, according to a study featured on the cover of the journal Immunity."

Until they find a drug that mediates this response you will probably not hear many doctor's talk about it.

They have also found recently this same response to Niacin(amide) could help IBS but only say it "warrants further investigation" in this research entilted "Niacin ameliorates ulcerative colitis via prostaglandin D2-mediated D prostanoid receptor 1 activation."

https://www.ncbi.nlm.nih.gov/pubmed/28341703

I had done this research for a friends father who like you has been struggling with a lot of  GI problems...I don't know if he will listen to  me or not ...but I sent the information by his daughter to see if he would listen.

I hate to see you wait another 10 to 15 years until a drug has been developed that mediates/moderates this same effect of a Vitamin in the body....

it is true this only happens in about 1/3 of chrons' patients (probably) (a genetic deficiency) but the 1/3 of those it could help would/could be world/life changing.

I need to finish this post before it get too long so I will just post this thread blog post that explains how to take Niacin(amide) properly for best results.

https://www.celiac.com/blogs/entry/2109-whos-afraid-of-a-b-vitamin-you-neednt-bee-a-faq-on-niacinamide-and-how-to-take-niacinamide-and-why-you-would-want-to-in-the-first-place/

I hope this is helpful but it is not medical advice...but don't expect any improvement for a couple of months ...so it pays to be patient with this strategy. ....I have been low in several B-Vitamins and I didn't notice an improvement until the 2nd or 3rd month.

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

2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things" this included.

Posterboy by the Grace of God,

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