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lasvegas

Confusing Diagnosis, Would Appreciate Your Opinion!

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Hi everyone,

 

I don't think I've ever used a public forum before, but after lurking on here for some time, I wanted to ask for your opinions on my diagnosis and ongoing symptoms. I'm going out of my mind and would really appreciate any feedback you can offer - there appear to be some real experts on this forum, and I trust in your experiences much more than my doctors opinions!

 

The quick version is as follows:

  • Diagnosed with Ulcerative Colitis 10 years ago (flares occasionally, and sometimes requires steroid treatment)
     
  • Steatorrhea (pale stools) started 2 years ago. Started once or twice per week, then after a few months, happened every time (haven't had a normal colored BM in 18 months+). Also pain in upper abdomen that has gotten progressively worse.
     
  • Gastro specialist (and every other doc I've seen) did not take me seriously - asked to take medication for anxiety!
     
  • Doc's eventually ran tests - negative for celiac antibody blood test. Pancreatic enzymes fine (stool test). Did Ultrasound (all main organs), CT Scan (all main organs), MRI of Liver, Barium follow through on Small Bowel - all showed nothing other than 'fatty liver'. My liver function blood tests have been up and down throughout this period too.
     
  • Doc FINALLY did Gastroscopy (January 2014). Biopsies of small intestine showed inflammation and villous atrophy
     
  • Told this was possible infection and given antibiotics. No change to symptoms. I was then given the diagnosis of Celiac (January 2014)

 

In January I started what the dietician called a gluten free diet. This included processed foods from supermarkets, soya milk, dairy etc. Everything I ate claimed to be gluten free (dietician told me all supermarket foods marked as gluten-free are completely safe!). No changes to symptoms in 4 months. 

 

During this period my colitis flared and I went onto high dose of prednisolone for 3 weeks, tapering off for another 3 weeks. This got the colitis under control (ie: stopped bleeding) but my pains never went away and BMs are still pale/yellow looking.

 

For the last two weeks I've been eating nothing but bananas, beef, chicken, fish (inc. prawns), vegetables, herbs. No dairy, soy, nothing processed etc. I drink water and have had one or two herbal teas (camomile). I feel terrible!

The pains in my upper abdomen are crippling and I constantly feel nauseous. I have had water BMs (for last 5 days) and see undigested bits of food in toilet.


I should note that I'm very paranoid about cross contamination and I don't even kiss my wife on the lips now :(

 

Someone has recently told me all about the horrifying effects of refractory celiac disease and I'm not petrified that I might have this due to the inflammation being present in my guts for at least 2 years (probably at least 3 years, if not more!). 

 

  1. Should I start feeling better (certainly not worse) on the current diet after 2 weeks?
     
  2. If I show negative for celiac antibodies, what does this mean? Could I still be celiac? Is there anything else I should consider?
     
  3. Would you recommend I continue on the current diet (I'm trying to avoid anything that could cause problems!)
     

If anyone could offer some guidance, it would mean a lot to me. The doctor originally told me I should start feeling better within 2 weeks of going gluten free!

 

PS: I should also mention I have a follow up gastroscopy next week (with a new doctor), plus a colonoscopy (I have one every 2-3 years to check on the colitis)

 

Thanks in advance!

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I am glad you are getting a colonoscopy soon. That might be helpful. Tell this new doc all your issues. Are those foods OK for colitis? Probably, or you wouldn't be eating them.

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I am glad you are getting a colonoscopy soon. That might be helpful. Tell this new doc all your issues. Are those foods OK for colitis? Probably, or you wouldn't be eating them.

Hi Kareng, thanks for your reply.

The foods are mostly okay for colitis... I am having too much fibre so that's causing some large colon distress. Not a colitis flare up, but this could be part of the reason for the watery BMs. It's difficult as I would normally eat a high carb, fairly low fibre diet for colitis and I've gone completely the other way in order to try and calm the small bowel problems. Some days I daren't eat (but I still do!)...

I was hoping someone on the board might have had a similar experience and be able to offer some guidance.

Thanks again for your reply.

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Sorry you are having such a rough time. You mention that your wife still eats gluten. Do you prepare both gluten and gluten free foods in the same kitchen? If so be sure that you have read the 'Newbie 101' [found at the top in the Coping section] on all that needs to be done to keep you safe in a shared kitchen. Things like a new toaster, not sharing condiments, wooden utensils etc.

I am glad your doctors are trying to get to the bottom of things and hope you improve soon. 

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Sorry you are having such a rough time. You mention that your wife still eats gluten. Do you prepare both gluten and gluten free foods in the same kitchen? If so be sure that you have read the '101' section on all that needs to be done to keep you safe in a shared kitchen. Things like a new toaster, not sharing condiments, wooden utensils etc.

I am glad your doctors are trying to get to the bottom of things and hope you improve soon. 

Hi Ravenwoodglass.

 

Thanks for your reply. My wife and two children both still eat/cook gluten in the kitchen. I wash everything before using it (such as cutlery, even after it's been in the dishwasher) and I have my own pans and utensils.

I don't eat any kind of bread so don't toast anything. The only thing we 'share' is the oven. I occasionally use it to cook chicken etc, and my wife uses it for gluten foods too. I cover the whole tray with tin foil before placing any of my items on there.

 

Is the over an issue? Should I not use the oven anymore, in your opinion? That's the only thing I think we share in the kitchen...

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Apologies for another post, but I wondered if anyone reading this also suffered from pale stools before they were diagnosed with celiac? I've read tons of stuff on this forum, and most people seem to have pains, loose stools, brain fog, etc... but I've not come across many other people that have yellow or pale stools. Apologies for the personal questions!

 

The reason I ask if because I'm worried that it's an unusual symptom, and might possibly point to something else?

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Have you had a HIDA scan on your gallbladder? My family is cursed with non-functioning gallbladders (fails to empty) making digestion of foods very difficult and painful. Curse? My Dad is one of seven siblings, and six of them have had their gallbladders removed. I am one of 27 cousins and so far, the five eldest have had their gallbladders removed. Traditionally in our family, our gallbladders (stones were never seen or existed on an ultra scan) would work on and off. By the time most of us reached our 40's (one in her teens), our gallbladders would completely stop working making us so ill that we could only eat liquids. Infection would set in and the gallbladder would rot. Surgery was the only option.

Now, younger family members can avoid all the pain (or at least most of it), with a HIDA scan. I think anything less than 20% of functionality is a candidate for surgery.

My rotting, non-functioning gallbladder (0% functionality) was removed almost a decade prior to my celiac disease dx. I was finally admitted by an ER doc who thought I had appendicitis. The surgeon suspected my gallbladder finally -- even though all previous docs knew of the family curse, but in their defense, the HIDA Scan was not available.

One test, the HIDA scan, has saved so many in my family over the past 8 years!

I hope this little rant helps!

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Hi cyclinglady. Thanks for your input. I have mentioned gall bladder to every doctor I've seen. I keep hearing that there is nothing visible on ultrasound/ct scan so everything is fine!!!

I'm going to mention this to the new specialist too. I'm pleased you are you're family are all well now after having the surgeries!

Can I just ask, would ga bladder problems give inflammation in the small intestine? If so, why?

Many thanks

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Well, you have celiac disease and that creates inflammation! Remember , it takes months or years to rebuild that villi. Plus, think of how your intestines may feel after a good dose of oily, fatty foods that come down the tract and your gallbladder can not squeeze enough bile out to digest the oily, fatty food. (I am all for fat-filled diet since I am also diabetic and this keeps my blood glucose in check and I seem to digest it well despite not having a gallbladder!)

You've celiac disease, colitis, and possible gallbladder issues -- all promote inflammation! The good new is that you may be able to calm down the inflammation with a gluten-free diet and avoid those foods that keep your colitis in check. Maybe even heal your gallbladder? celiac disease might be the root cause of my family's gallbladder curse! (If only I could get them all to test!)

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Have you had a HIDA scan on your gallbladder? My family is cursed with non-functioning gallbladders (fails to empty) making digestion of foods very difficult and painful. Curse? My Dad is one of seven siblings, and six of them have had their gallbladders removed. I am one of 27 cousins and so far, the five eldest have had their gallbladders removed. Traditionally in our family, our gallbladders (stones were never seen or existed on an ultra scan) would work on and off. By the time most of us reached our 40's (one in her teens), our gallbladders would completely stop working making us so ill that we could only eat liquids. Infection would set in and the gallbladder would rot. Surgery was the only option.

Now, younger family members can avoid all the pain (or at least most of it), with a HIDA scan. I think anything less than 20% of functionality is a candidate for surgery.

My rotting, non-functioning gallbladder (0% functionality) was removed almost a decade prior to my celiac disease dx. I was finally admitted by an ER doc who thought I had appendicitis. The surgeon suspected my gallbladder finally -- even though all previous docs knew of the family curse, but in their defense, the HIDA Scan was not available.

One test, the HIDA scan, has saved so many in my family over the past 8 years!

I hope this little rant helps!

 

 

THIS is my family exactly. My mom and her 6 siblings--all Gall bladder- less by their 40's.

I doubt any one of the 28 cousins still have their GB. Every time I turned around, someone else's was gone. (i think my brother may be the only one with one left)

I lost mine 28 years ago. It was just the beginning of so many things....

I often wonder if my GB could have been saved (and the other 5 organs I lost) had i known about the celiac.

ah, we'll never know. 

 

lasvegas--

Hang in there. It takes time to heal, but you'll get there. And if it makes you feel better, I used to have pale stools too. (it's okay, we talk about poop on here)  ^_^

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THIS is my family exactly. My mom and her 6 siblings--all Gall bladder- less by their 40's.

I doubt any one of the 28 cousins still have their GB. Every time I turned around, someone else's was gone. (i think my brother may be the only one with one left)

I lost mine 28 years ago. It was just the beginning of so many things....

I often wonder if my GB could have been saved (and the other 5 organs I lost) had i known about the celiac.

ah, we'll never know. 

 

lasvegas--

Hang in there. It takes time to heal, but you'll get there. And if it makes you feel better, I used to have pale stools too. (it's okay, we talk about poop on here)  ^_^

How can a gene be so strong that it is not watered down by introduction of new genes from members who marry into the family? I have a very strong feeling that most of my extended family has issues with gluten and I think there is a link between celiac disease and gallbladder disease. Only one Aunt gave up gluten and found relief per the advice of her chiropractor. One cousin had an endoscopy done prior to my dx, but they did not check for celiac disease (and she is in the medical field and has access to the best, you would think). Since her Mom did great going gluten free, she opted to do the diet. She only gets glutened accidentally and boy, does she feel it then! She refuses to do a challenge and I can not blame her. She is pretty sure she has celiac disease.

Most in my family would rather suffer than get tested for celiac disease. If they can take a pill, they will! Major surgery, no problem, but give up gluten? No way!

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I also had gallbladder issues for about a year before they figured it out.  I had a lot of problems with my stools, a burning sensation across my whole chest under my ribs, no matter what I ate I felt awful.  I also didn't have stones, or any other classic signs, except my gallbladder was inflamed.  It was such a small amount they weren't going to do anything with it.  I was finally hospitalized and my doctor talked to a different surgeon that agreed to take my gallbladder out.  It was non- functional and I woke up from the surgery feeling great.  Now if they only would have take out my crappy appendix( literally crappy appendix, it was impacted with stool).  I walked around with chronic appendicitis since Jan 30 when the inflammation was first observed until I had my appendix out two weeks ago.  I also had to fight for them to take that out.  The off and on fevers,  daily vomiting, and pain strong enough to need medication wasn't a big enough tip off to them that something was wrong. My second trip to the ER in a matter of six hours and I refused to leave, told them I would go to the car and come back and I would repeat the process until they admitted me and figured out what the hell was wrong with me.  I thought they were going to call security.  Had my appendix out two days later after a colonscopy that morning and a triple surgery in the afternoon: they found a hernia in this whole fiasco that was repaired, my appendix out, and exploratory lap of my lower stomach. In the end it was worth it. I woke up from the surgery feeling great, and starving! I was taking three anti-nausea pills a day for months prior and since the surgery I have only taken three, the doctors were trying to tell me I was getting glutened when I knew I wasn't, knew it was different.  I would say it worked.

If you keep going to the doctor with the same symptoms time and time again and they don't work as hard as they can to figure out why and just dismiss it as Celiac, I would get a new doctor.  Rinse and repeat if necessary.

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How can a gene be so strong that it is not watered down by introduction of new genes from members who marry into the family? I have a very strong feeling that most of my extended family has issues with gluten and I think there is a link between celiac disease and gallbladder disease. Only one Aunt gave up gluten and found relief per the advice of her chiropractor. One cousin had an endoscopy done prior to my dx, but they did not check for celiac disease (and she is in the medical field and has access to the best, you would think). Since her Mom did great going gluten free, she opted to do the diet. She only gets glutened accidentally and boy, does she feel it then! She refuses to do a challenge and I can not blame her. She is pretty sure she has celiac disease.

Most in my family would rather suffer than get tested for celiac disease. If they can take a pill, they will! Major surgery, no problem, but give up gluten? No way!

 

There is definitely a link between impaired gall bladder motility and celiac disease. It's listed as a related symptom/condition on the literature on the Univ. of Chicago celiac research center. 

 

I am glad your aunt and cousin are getting relief, but i wish chiropractors would stop  'diagnosing people".  If they want to help their patients, they should suggest people be tested first. If the testing is negative and they want to go G F anyway, fine, but if something else is a problem and they have not seen a doctor to properly rule things out, they may be missing something important.

 

( and I don't blame them for not doing a gluten challenge either!) 

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Hi cyclinglady. Thanks for your input. I have mentioned gall bladder to every doctor I've seen. I keep hearing that there is nothing visible on ultrasound/ct scan so everything is fine!!!

I'm going to mention this to the new specialist too. I'm pleased you are you're family are all well now after having the surgeries!

Can I just ask, would ga bladder problems give inflammation in the small intestine? If so, why?

Many thanks

 

Hi LV,

 

I went for the technicolor stool myself.  Pale tannish, black as night, green as cucumber!  A little bleeding thrown in sometimes for added flare.

 

The gallbladder releases bile into the duodenum in response to chemical signals from the small intestine.  Those chemical signals are dependent on things in the small intestine being in good repair and working sorta right.  So there is a definite possibility celiac can impact the performance of the gallbladder.  The bile acts to nuetralize the partially digested food from the stomach.  It is partially digested from being chewed up and then bathed in hydrocloric acid.  As you can imagine it is nice for your small intestine f the hydrocloric acid is nuetralized.  If it isn't nuetralized, a bit of digestion of the small intestine, oops, inflammation, may occur.

 

The small intestine is in a constant state of repairing itself because of the rough life it leads.  The villi are  rebuilding all the time and being torn down all the time.  In normal guts the villi rebuild themselves fast enough to stay ahead of the damage.  But with celiac disease the immune cells attack the villi and make it hard to ever get recovered.  They can't rebuild fast enough to stay ahead of the damage.

 

The immune system is very powerful and keeps us from dieing of the common cold.  It's no light-weight and it doesn't give up easily.  It may be weeks to months before your immune system settles down and stops attacking your gut.  The thing to do is avoid all gluten like the plague for a year or so.  Give your immune system a chance to relax.  Every time your gut is exposed to dietary gluten it will kick off a new round of immune reaction.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy if it causes symptoms.

Avoid sugars and starchy foods. They can cause bloating.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Thanks everyone for your input.

I had colonoscopy and gastroscope today. The great news is my colitis is in remission and there's no sign of inflammation in my large bowel.

The doc inspected the bottom of my small bowel during the colonoscopy and the villi all looked very healthy.

On the gastroscopy he found an ulcer on my gullet (oesophagas) which he said has been caused by too much stomac acid.

I don't get symptoms of heart but not gerd but I'm assuming I could have it without realising?

The duodenum folds are alightly thickened but there's no immediate sign of inflammation.

Prescribed omeprazole for 8 weeks to assist in healing the ulcer.

Took biopsies from everywhere so I should get those results in a few weeks.

Any input on this would be much appreciated. Has anyone else had oesophagatis? And did it heal (and did that reduce the amount of pain!?)

I have a follow up appointment booked and I'm going to insist on having a hida scan due to your advice above.

Thanks again to everyone that responded above :)

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Hi LV,

I went for the technicolor stool myself. Pale tannish, black as night, green as cucumber! A little bleeding thrown in sometimes for added flare.

The gallbladder releases bile into the duodenum in response to chemical signals from the small intestine. Those chemical signals are dependent on things in the small intestine being in good repair and working sorta right. So there is a definite possibility celiac can impact the performance of the gallbladder. The bile acts to nuetralize the partially digested food from the stomach. It is partially digested from being chewed up and then bathed in hydrocloric acid. As you can imagine it is nice for your small intestine f the hydrocloric acid is nuetralized. If it isn't nuetralized, a bit of digestion of the small intestine, oops, inflammation, may occur.

The small intestine is in a constant state of repairing itself because of the rough life it leads. The villi are rebuilding all the time and being torn down all the time. In normal guts the villi rebuild themselves fast enough to stay ahead of the damage. But with celiac disease the immune cells attack the villi and make it hard to ever get recovered. They can't rebuild fast enough to stay ahead of the damage.

The immune system is very powerful and keeps us from dieing of the common cold. It's no light-weight and it doesn't give up easily. It may be weeks to months before your immune system settles down and stops attacking your gut. The thing to do is avoid all gluten like the plague for a year or so. Give your immune system a chance to relax. Every time your gut is exposed to dietary gluten it will kick off a new round of immune reaction.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy if it causes symptoms.

Avoid sugars and starchy foods. They can cause bloating.

Avoid alcohol.

Watch out for cross contamination.

Helpful threads:

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

Hi GFinDC - just noticed your reply and wanted to say thanks!

I'm already eating a non-processed diet. Basically a paleo diet - just fruit/veg/protein. Nothing else!

Have you got any suggestions for foods that could be added safely or is this what you are for the first year?

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Hi GFinDC - just noticed your reply and wanted to say thanks!

I'm already eating a non-processed diet. Basically a paleo diet - just fruit/veg/protein. Nothing else!

Have you got any suggestions for foods that could be added safely or is this what you are for the first year?

Hi Lasvegas,

 

There are some things that I would consider safe.  Mission brand corn tortillas are made on dedicated lines and are gluten-free.  They only have a few ingredients and have never given me problems.  There are some rice wraps like Food For Life brown rice tortillas and Rudi's wraps that are fine.

 

Nuts are often ok, but you need to verify the ingredients.  Planters brands will label any gluten ingredients in their nut products.  Nuts in the shell are safe.

 

If you buy your own gluten-free flours (or make them) you can try making these microwave buns.

 

Easy yummy bread in minutes

http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/

 

The point of eating whole foods for awhile is to get used to eating different and avoid making mistakes and also give your body the easiest chance of healing.  If you feel you are stable and healthy at 5 or 6 months then go ahead and start adding other foods one at a time.  Once you're gut is healthy for a while you'll probably notice foods that cause issues easier.

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
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