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Looking for advice. Was diagnosed Celiac 3 months ago with all following details:

 

Gastroenterologist scoping and bloods

 

• biopsy Marsh score 1 no atrophy (lymphocyte count 68/100)

• antibody blood test negative

• both colonoscopy and endoscopy negative for infections or bowel disease

 

Allergist gene testing and bloods

 

• HLA DQ A*05 Postive

• HLA DQ B*02 Negative

• HLA DQ B*03:02 Negative

• ECP (Esinophile Cationic Protein) 66.7 ug/l which is 4 x baseline level

• skin prick test for over 40 allergens including wheat etc all negative

 

Urologist blood tests

 

• extremely low testosterone (almost zero and tested 3 times)

• diagnosed as primary low T

 

Symptoms that all creeped up at same time pre diagnosis:

 

• stomach upset, noises, mixed stools

• migraines, dizziness, nausea

• tiredness, weakness, lethargy

• anxiety, depression, no interest

• knuckle, hip, back pain

• weight loss (7kg pre diagnosis, 15kg post diagnosis)

 

I’ve been eating gluten free now for 2.5 months and taking testosterone gel daily and since 1.5 months been feeling better.

 

However.

 

I’m still having issues. I cannot tolerate any type of synthetic or derived sugars. I cannot eat buckwheat, couscous, yeast, corn, dairy, brown rice, most other non-gluten grains. Can’t do chocolate, tea and numerous other things. When I feel Glutened I can only explain it as a panick attack building up to what feels like an allergic reaction that affects both my respiratory system and nervous system.

 

What I don’t understand is why suddenly if I’m apparently celiac, I’m having so many issues.

 

Some questions I ask myself:

 

1. I thought the HLA DQ2 + DQ8 was key to being celiac. Why when it’s negative I have the diagnosis?

2. I don’t really understand the function HLA DQ5 - I know it is a positive mutation but I read for other immune disease traits. Anyone enlighten me on this gene? I have little knowledge and my doctor had no clue.

3. My knuckle pain is getting worse and I suspect Rheumatological overlap which would explain an immune issue. Anyone experience or can relate to this?

4. Migraines are coming back after being dormant for 1.5 months. Is this common with celiac? You feel good, it plateaus, then you feel bad again?

5. Any relation to low testosterone? Again, can anyone relate to my story and tests/results?

6. Esinophile blood test 4x normal range. What the heck? I’m only 40 years old and something’s not right even with 16kg weight loss since November 2018.

 

I speak with my doctor and he’s like, be lucky you lost weight you were 106kg which is pretty much over and also remember not to eat gluten. Slightly clueless if you ask me and not helping with my fear that they have missed something. What’s the coincidence that so many systems go wrong at the same time. Thanks for reading my story and if anyone has had a similar experience I’d be forever grateful for some feedback.

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Most of us end up with a whole list of things we also cannot eat, heck many the same as you. Keep a food diary, it is not uncommon to get new ones with later exposure. I keep a list in my signature. 

I also have a rare gene for celiac that makes me prone to other things as well some of which I have gotten and others I have the potential to get but am negative for. Your genes essentially put the cards in the deck but what your draw has many different possibilities. 
Now I wikied the gene you mentioned then cross-referenced the alleles in common with and checked the snipped gene reports and without an actual gene report with full snippet info, there is no way to get more definitive answers then to guess at the range of info. But Celiac was associated with some along with many other AI issues that "Could" come up.  IE

I can not tolerate any carbs or sugars either, I used to go low carb to avoid bloat, then I avoided sugars to stop the UC from causing bleeding, then ended up finding it was spiking my glucose when I cheated and made me feel all kinds of crazy bad and I went keto. 

The stuff acting up again sounds like you might have had an accidental exposure again, Go back to a whole foods simple diet for a while and rotate your foods to see if you got a new intolerance or sensitivity.

Many of us with damaged guts get nutrient deficiencies and have to supplement. Some of these can cause all kinds of other complications. Might do good to check your symptoms against the deficiencies for B-vitamins (all of them), Vitamin D, Magnesium, Iron, Folate, etc. Some deficiencies issues can lead to hormone imbalances, you might also get your thyroid checked. 

I have no clue what is up with my T myself, I am trying boosters to my drive up and body build but find myself constantly A-sexual, and trouble building up muscles. I figure having multiple autoimmune diseases my body has other priorities then procreation. 

Do note it takes most people 6 months-2 years to feel "normal" again, you are still a bit early in and it might just be some troughs as your body finds the new normal and heals.

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For me, seems like there are times when the immune system just gets cranky for some reason and I get extra aches and pains until it settles back down. It's good to keep in mind that people with celiac disease have dysfunctional immune systems that seem to have a mind of their own. It's also extremely common to develop other autoimmune diseases once you get the first one.

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8 hours ago, Ennis_TX said:

 

Most of us end up with a whole list of things we also cannot eat, heck many the same as you. Keep a food diary, it is not uncommon to get new ones with later exposure. I keep a list in my signature. 

I also have a rare gene for celiac that makes me prone to other things as well some of which I have gotten and others I have the potential to get but am negative for. Your genes essentially put the cards in the deck but what your draw has many different possibilities. 
Now I wikied the gene you mentioned then cross-referenced the alleles in common with and checked the snipped gene reports and without an actual gene report with full snippet info, there is no way to get more definitive answers then to guess at the range of info. But Celiac was associated with some along with many other AI issues that "Could" come up.  IE

I can not tolerate any carbs or sugars either, I used to go low carb to avoid bloat, then I avoided sugars to stop the UC from causing bleeding, then ended up finding it was spiking my glucose when I cheated and made me feel all kinds of crazy bad and I went keto. 

The stuff acting up again sounds like you might have had an accidental exposure again, Go back to a whole foods simple diet for a while and rotate your foods to see if you got a new intolerance or sensitivity.

Many of us with damaged guts get nutrient deficiencies and have to supplement. Some of these can cause all kinds of other complications. Might do good to check your symptoms against the deficiencies for B-vitamins (all of them), Vitamin D, Magnesium, Iron, Folate, etc. Some deficiencies issues can lead to hormone imbalances, you might also get your thyroid checked. 

I have no clue what is up with my T myself, I am trying boosters to my drive up and body build but find myself constantly A-sexual, and trouble building up muscles. I figure having multiple autoimmune diseases my body has other priorities then procreation. 

Do note it takes most people 6 months-2 years to feel "normal" again, you are still a bit early in and it might just be some troughs as your body finds the new normal and heals.

Thanks Ennis. Some really good advice. I'm pretty low on Vitamin D, but every time I take any type of supplement I have bad reactions. I even went out my way to find Vitamin D that is organic and has no sweeteners, fillers or any other ingredients other than what is core to making vitamin D. But hey, my body doesn't like it. From my tests all B, E and C vitamins, are in check. My antioxidative stress test was 56 and normal range is under 40. I think because my Marsh score was 1 without villi atrophy, I am still well nourished.

 

I'm slightly getting panicked about what to eat. I mean if I cannot eat any carbs, how does one function? The only carbs that seem ok are white rice flour made into baby porridge and potatoes. I can't tolerate eggs and some fruits so I'm left with eating only lettuce, cucumber and tomatoes (also not much tomatoes)... I feel rather hopeless with this right now. Surely I am going to end up with nutrition problems eating white stuff and salads for the rest of my life. My weight loss is of major concern - people keep mentioning it and also how pale I look - no anemia by the way. This sure does suck big time.

 

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7 hours ago, trents said:

For me, seems like there are times when the immune system just gets cranky for some reason and I get extra aches and pains until it settles back down. It's good to keep in mind that people with celiac disease have dysfunctional immune systems that seem to have a mind of their own. It's also extremely common to develop other autoimmune diseases once you get the first one.

Thanks Trent! Oh boy, life sometimes just throws a curve ball - potentially more autoimmune diseases... my knuckle pain has been constant for 4 months now. I guess that's not a flare up.

Feeling kinda lost being a Scotsman living in Germany and not know which type of doctor to go to and what other tests I should get. Damn this disease.

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I started with a Paleo diet (diet of our ancestors) but moved to one with Keto Ratios, Basically, my body uses fat for fuel not carbs, and the human body is actually designed to do this on rotation and our ancestors would do this with seasons. 

But I often use almond and coconut flour to make nut meal porridge and use it to make baked goods also. Nut butter is also easy to digest. I myself used to not tolerate any egg yolks (whites were fine), meats, or greasy oily foods. Still, have to go easy on them but found I had issues with my pancreas producing enough enzymes to break them down. I now take digestive enzymes for a high-fat diet and take pig pancreas enzymes to digest my meals.

Try stuff like slow cooked roast, stews, or sheet pan meals with meats and veggies you can tolerate. The nut meal porridge is decent if you want to try that. Stir Fry used to be another staple of mine. I personally eat a bunch of egg dishes as my primary, but if you have egg issues you might try more meats, and nuts. 

 

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3 minutes ago, Ennis_TX said:

I started with a Paleo diet (diet of our ancestors) but moved to one with Keto Ratios, Basically, my body uses fat for fuel not carbs, and the human body is actually designed to do this on rotation and our ancestors would do this with seasons. 

But I often use almond and coconut flour to make nut meal porridge and use it to make baked goods also. Nut butter is also easy to digest. I myself used to not tolerate any egg yolks (whites were fine), meats, or greasy oily foods. Still, have to go easy on them but found I had issues with my pancreas producing enough enzymes to break them down. I now take digestive enzymes for a high-fat diet and take pig pancreas enzymes to digest my meals.

Try stuff like slow cooked roast, stews, or sheet pan meals with meats and veggies you can tolerate. The nut meal porridge is decent if you want to try that. Stir Fry used to be another staple of mine. I personally eat a bunch of egg dishes as my primary, but if you have egg issues you might try more meats, and nuts. 

 

Again really useful thanks. I'll look into those flours. I think I have coconut flour but was afraid of another reaction. I just seem to get better, introduce something new, then have to recover. Tough for the sole bread winner with a wife and 2 kids to support and be healthy enough to actually work.

The pancreas is an interesting angle. My doctor has been puzzled since my Lipase has always been above normal range for many years. However, I did have an alcoholism history but no longer drink alcohol for over one year now. But that Lipase isn't going down.

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Vitamind D can come from a few different sources, we have some members that can not have D3 from Lanolin which is the most common source. This is from a waxy substance secreted from glands on a sheep. You might have to look at a D3 from fish sources or a vegan sourced D2 if you wish to try again. I am sure some other members can give you the brand for this.

"Very high lipase levels usually indicate pancreatitis or blockage of the tube (duct) leading from the pancreas to the beginning of the small intestine (duodenum). * High lipase levels may indicate damage to the pancreas caused by a stomach ulcer that has eroded, or perforated, the wall of the stomach."   This could lead to poor digestion and your food issues due to the enzymes not being present to break them down, look at the digestive enzyme post for some common enzyme deficicy issues. This would also explain your limited diet as you can not break down the foods your eating so they cause issues.

https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
https://www.celiac.com/forums/topic/119919-digestive-enzymes/

 

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You have been given some good advice, but remember we are all unique and what works for one celiac, may not work well for others. You just need to experiment and find your own way.  For example, Ennis uses nut flours or butters, but I have nut allergies.  I also have some intolerances that have not resolved (e.g. garlic, Xanthan Gum, onions) even after healing from celiac disease.  

Focus on healing from celiac disease.  Your joint issues may resolve with time on the gluten free diet as they are often associated with celiac disease.  If it does not improve after a year, you might have another issue going on (e.g. rheumatoid arthritis).  

The advice about digestive enzymes is very helpful.  So is consuming well-cooked foods (even fruit) making it easier for your body to digest.  I go to these well-cooked foods after a gluten exposure, because eating anything (once my celiac disease is activated) hurts to digest!  It can take time to recover from gluten exposures.  Members report a few days to a months.    Expect setbacks.  This is normal.  People make mistakes.  Just keep moving forward.  

Vitamin D?  Get out in the sun for a few minutes each day, if you are in the Northern Hemisphere.  Spring is here (hopefully where you live).  Google for safe sun exposure times.  My dogs would lay out for at least 10 minutes.  Not very scientific, but they seem to know.  

Sugars are fine in moderation.  No one should consume that much sugar as evidenced by our diabetes and obesity issues world-wide, but it does not impact celiac disease in terms of activating it.    Too much fruit can be hard to digest in a damaged gut (fructose intolerance).   Again, moderation is key.  

Weight?  Often when first diagnosed we are worried about eating.  Will we make a mistake and consume gluten?  Frankly, it can hurt when the stomach empties into the small intestine.  Try to consume enough calories in a day. Based on your height and desired weight.    Make sure you are consuming fats (animal fats, olive oil, butter) and proteins (meat, poultry and fish)  if you are reducing carbs.  

Blood test negative?  I can share that my GI ran the entire celiac panel.  I only test positive to the DGP IgA even in repeated blood panels.  So, not everyone tests positive to the standard screening TTG.  It can be expensive to run the entire panel.  Also, some celiacs (about 10%) are seronegative.  

Genes?  I am not an expert on genes.  I was never tested, so I have not really researched them.  I do know that some genes have been identified, but honestly, there are other genes that are attributed to celiac disease (as evidenced by forum members) or some that have yet to be discovered.  

Hormones?  Those can be impacted by celiac disease (remember celiac disease is systemic).  Those might resolve with healing.  I have Hashimoto’s Thyroiditis too.    Once gluten free and my gut healed, my thyroid enlargement and nodules healed.  Twenty years and I worried about those nodules and cancer.  Now, I still have to take thyroid hormone replacement, because my thyroid was permanently damaged.  But your small intestine can heal!  My other hormones were really crazy for years.  I was even low for testosterone for a woman.   All that setttled down once I healed.  

You stated that you are feeling better.  So, your diagnosis is most likely correct.  I think you need more time to recover.  Wait a year.  I am serious.  It takes that long.  It is not just the intestinal tract that is effected.  Celiac disease is systemic and those other body systems take time to recover.  

Hang in there.  Ask questions and feel free to vent!  

 

 

 

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13 hours ago, Defokus said:

Again really useful thanks. I'll look into those flours. I think I have coconut flour but was afraid of another reaction. I just seem to get better, introduce something new, then have to recover. Tough for the sole bread winner with a wife and 2 kids to support and be healthy enough to actually work.

The pancreas is an interesting angle. My doctor has been puzzled since my Lipase has always been above normal range for many years. However, I did have an alcoholism history but no longer drink alcohol for over one year now. But that Lipase isn't going down.

Defokus,

If it is just Lipase and not other pancreas enzymes too then going gluten free should help your enzymes go down.... I had elevated liver enzymes that went down after a year.

40 percent of celiac's have elevated enzymes(usually liver enzymes) at time of diagnosis but only 25 percent of celiac's  have elevated pancreas enzymes.

Here is some research on it.

https://www.researchgate.net/publication/7164590_Unexplained_Elevated_Serum_Pancreatic_Enzymes_A_Reason_to_Suspect_Celiac_Disease

https://theceliacscene.com/elevated-liver-enzymes-celiac-disease/

I also had fatty liver and don't drink at the time of celiac diagnosis which is  now better supported by what the research says ...at about a year most celiac's elevated enzymes will get better on a gluten free diet.

https://www.verywellhealth.com/celiac-disease-and-liver-diseases-562618

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

Posterboy,

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Really helpful thanks. I also have fatty liver (from years of alcoholism). Been dry for over a year already but it was still fatty pre-diagnosis.

my lipase for the last 3 years has always been 5-10 points above the normal range so it’s not like they’re extremely elevated. Really encouraging to hear they can be reduced on a gluten-free diet.

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7 hours ago, cyclinglady said:

You have been given some good advice, but remember we are all unique and what works for one celiac, may not work well for others. You just need to experiment and find your own way.  For example, Ennis uses nut flours or butters, but I have nut allergies.  I also have some intolerances that have not resolved (e.g. garlic, Xanthan Gum, onions) even after healing from celiac disease.  

Focus on healing from celiac disease.  Your joint issues may resolve with time on the gluten free diet as they are often associated with celiac disease.  If it does not improve after a year, you might have another issue going on (e.g. rheumatoid arthritis).  

The advice about digestive enzymes is very helpful.  So is consuming well-cooked foods (even fruit) making it easier for your body to digest.  I go to these well-cooked foods after a gluten exposure, because eating anything (once my celiac disease is activated) hurts to digest!  It can take time to recover from gluten exposures.  Members report a few days to a months.    Expect setbacks.  This is normal.  People make mistakes.  Just keep moving forward.  

Vitamin D?  Get out in the sun for a few minutes each day, if you are in the Northern Hemisphere.  Spring is here (hopefully where you live).  Google for safe sun exposure times.  My dogs would lay out for at least 10 minutes.  Not very scientific, but they seem to know.  

Sugars are fine in moderation.  No one should consume that much sugar as evidenced by our diabetes and obesity issues world-wide, but it does not impact celiac disease in terms of activating it.    Too much fruit can be hard to digest in a damaged gut (fructose intolerance).   Again, moderation is key.  

Weight?  Often when first diagnosed we are worried about eating.  Will we make a mistake and consume gluten?  Frankly, it can hurt when the stomach empties into the small intestine.  Try to consume enough calories in a day. Based on your height and desired weight.    Make sure you are consuming fats (animal fats, olive oil, butter) and proteins (meat, poultry and fish)  if you are reducing carbs.  

Blood test negative?  I can share that my GI ran the entire celiac panel.  I only test positive to the DGP IgA even in repeated blood panels.  So, not everyone tests positive to the standard screening TTG.  It can be expensive to run the entire panel.  Also, some celiacs (about 10%) are seronegative.  

Genes?  I am not an expert on genes.  I was never tested, so I have not really researched them.  I do know that some genes have been identified, but honestly, there are other genes that are attributed to celiac disease (as evidenced by forum members) or some that have yet to be discovered.  

Hormones?  Those can be impacted by celiac disease (remember celiac disease is systemic).  Those might resolve with healing.  I have Hashimoto’s Thyroiditis too.    Once gluten free and my gut healed, my thyroid enlargement and nodules healed.  Twenty years and I worried about those nodules and cancer.  Now, I still have to take thyroid hormone replacement, because my thyroid was permanently damaged.  But your small intestine can heal!  My other hormones were really crazy for years.  I was even low for testosterone for a woman.   All that setttled down once I healed.  

You stated that you are feeling better.  So, your diagnosis is most likely correct.  I think you need more time to recover.  Wait a year.  I am serious.  It takes that long.  It is not just the intestinal tract that is effected.  Celiac disease is systemic and those other body systems take time to recover.  

Hang in there.  Ask questions and feel free to vent!  

 

 

 

Thanks 🙏 

do you recommend particular digestive enzymes? Thought I’d ask to save myself using ones that have hidden nasties inside 😉

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Ennis might have a good brand that is gluten free.  He also has Ulcerative Colitis which compounds his digestive issues.   I think CountryLife is certified gluten free.  I have used their lactose version (Dairyzymes) for the times I get a rare gluten exposure.  You could also consult with your pharmacist too.  

My best advice is to avoid processed foods as much as possible and do not eat out until you are feeling much better and are willing to risk an exposure.  Soups and stews.  Those are my go to safe foods when my small intestine is under attack.  Boring, yes.  But easier to digest for the short term.  

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1 hour ago, Defokus said:

Thanks 🙏 

do you recommend particular digestive enzymes? Thought I’d ask to save myself using ones that have hidden nasties inside 😉

RealZymes makes ones for each diet, the amount of enzymes you need depends on what your eating since different enzymes breaks down different types of foods. 
https://www.amazon.com/Real-ZymesTM-Digestive-Supplement-Probiotics-Digestion/dp/B07B9J56G8/?th=1

Enzymepedia makes broad-spectrum ones and high-fat diet versions.
https://www.amazon.com/Enzymedica-Potency-Enzymes-Digestive-Capsules/dp/B00HLXPTFA/
https://www.amazon.com/dp/B00028ORWC/
Jarrow Makes one that uses the 3 main ones derived from pig pancreas enzymes and is essentially the same stuff doctors prescribe for pancreatic inefficiency 
https://www.luckyvitamin.com/p-22289-jarrow-formulas-jarro-zymes-plus-100-capsules?

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On 4/19/2019 at 2:53 AM, cyclinglady said:

Ennis might have a good brand that is gluten free.  He also has Ulcerative Colitis which compounds his digestive issues.   I think CountryLife is certified gluten free.  I have used their lactose version (Dairyzymes) for the times I get a rare gluten exposure.  You could also consult with your pharmacist too.  

My best advice is to avoid processed foods as much as possible and do not eat out until you are feeling much better and are willing to risk an exposure.  Soups and stews.  Those are my go to safe foods when my small intestine is under attack.  Boring, yes.  But easier to digest for the short term.  

Thanks! I don’t eat processed food nor gluten free labelled processed foods. I don’t understand why I felt good for one month, then suddenly on the same diet, I’m now having loose stools with indigested food and at times it’s green.

Is arm and hand tingling/numbness normal? Also muscles in my back have this feeling like gas is blowing them up like a balloon. The nausea is also awful and it doesn’t help calm down my inner hypochondriac. It really is wearing down menatally. I can’t seem to get out the house for a walk. I just feel drained and really afraid.

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9 minutes ago, Defokus said:

Thanks! I don’t eat processed food nor gluten free labelled processed foods. I don’t understand why I felt good for one month, then suddenly on the same diet, I’m now having loose stools with indigested food and at times it’s green.

Is arm and hand tingling/numbness normal? Also muscles in my back have this feeling like gas is blowing them up like a balloon. The nausea is also awful and it doesn’t help calm down my inner hypochondriac. It really is wearing down menatally. I can’t seem to get out the house for a walk. I just feel drained and really afraid.

Not normal per se but could have many causes, some related to celiac, some other issues. I am not a doctor so I can not say for sure but here are my thoughts.

B-vitamins deficiency would be one of my top suspects,  B-5, for example, can cause tingling when deficient. B-vitamins are often sprayed on most processed foods and grains. Going whole food diet non-processed you can forget about living off of just a few staples, you need a varied diet of beats, nuts, seeds, leafy greens to get your vitamins/minerals or supplement. A sublingual liquid form does is the easiest.

Magnesium can cause muscle issues when deficient, in extreme cases, it can cause a burning tingling sensation, leg cramps at night, anxiety, etc. 

The cause could be, damaged intestines preventing adequate absorption, pancreas and enzyme issues preventing breaking down foods thus not absorbing or getting the nutrients out of the food you eat, or something else.  It could be even another AI issues or a form of ataxia. I myself had the magnesium and b-vitamin issues early and is why I swear by taking a liquid form of them daily in split doses to keep levels up. I also ended up with ataxia issues, but mine caused numbness, loss of pain, heat, and cold sensitivity, issues with holding stuff, walking, and in extreme cases left me with motor control loss. ,

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5 minutes ago, Ennis_TX said:

Not normal per se but could have many causes, some related to celiac, some other issues. I am not a doctor so I can not say for sure but here are my thoughts.

B-vitamins deficiency would be one of my top suspects,  B-5, for example, can cause tingling when deficient. B-vitamins are often sprayed on most processed foods and grains. Going whole food diet non-processed you can forget about living off of just a few staples, you need a varied diet of beats, nuts, seeds, leafy greens to get your vitamins/minerals or supplement. A sublingual liquid form does is the easiest.

Magnesium can cause muscle issues when deficient, in extreme cases, it can cause a burning tingling sensation, leg cramps at night, anxiety, etc. 

The cause could be, damaged intestines preventing adequate absorption, pancreas and enzyme issues preventing breaking down foods thus not absorbing or getting the nutrients out of the food you eat, or something else.  It could be even another AI issues or a form of ataxia. I myself had the magnesium and b-vitamin issues early and is why I swear by taking a liquid form of them daily in split doses to keep levels up. I also ended up with ataxia issues, but mine caused numbness, loss of pain, heat, and cold sensitivity, issues with holding stuff, walking, and in extreme cases left me with motor control loss. ,

Would you recommend other tests? Would an endocrinologist be a better option to check all bloods/vitamins/mineral levels?

I went to see a celiac specialist on Thursday because it’s not letting up and his attitude was “what do you think I can do for you?” I showed him all my test results and he said 2 things. 1. Not celiac but perhaps gluten intolerance and 2. Psychosomatic follow on symptoms from the intolerance/allergy. He said you changed your diet, you felt better, you know what to do. This angered me because I was looking for reassurance that there’s not something else going on. It’s frustrating being native English speaking in a foreign country. If my German was better I would’ve had a good argument with him.

My biopsy showed no villi damage with Marsh score 1. Lymphocytes 68/100. Iga bloods negative. There’s certainly some nervous system issues. For example when all the symptoms come on, I get speech issues like I’m drunk (slurred, weak voice). I even question if it is Celiac.

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