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Returning To Celiac 11 Years Later For Help


CiscoEngineer

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CiscoEngineer Newbie

Hi All and Nice to Meet Everyone

 

First, let me say that I haven't been around these parts for a good 10 years now. I was diagnosed in 2001 at age 16 with Celiac disease (back when it was virtually unheard of) and Acid Reflux/Heartburn.  I had multiple blood tests done and they always came back positive. I followed the gluten free diet for 2 years, and it didn't really improve my physical symptoms, which were just about 100% bowel related; Mostly high frequency, urgent and loose, but not pains and diarrhea.  Anyway, back then, the defining test to see if you had celiac was to do a sigmoidoscopy and check for villi damage.  I had that done in 2003 and there was no damage found, so I went off the gluten free diet. My bowel symptoms steadily improved over the years, but in late 2004, I did develop an overall feeling of malaise and just generally feeling like heck all the time which seems to get worse every year. Even on my good days, I still always feel like something is missing and life should feel happier.  I have consistently had severe heartburn ever since the Celiac diagnosis, however, and it is medicated with a PPI, though flare ups do happen despite.

 

Anyway, fast forward... I have been eating gluten since 2003, and up until a year ago, my stomach, while never really "normal," was stable enough that I could live my life. The malaise pretty much always hung around, and so did the bad heartburn, though. I started developing the urgency feeling again, and my BM frequency went up to 3 times per day on average.  Not as bad as 10 years ago, but that's not all.  Towards late 2012, I was developing unexplained aches and pains, social phobias of being out in public, and heart-attack mimicing symptoms 4 times a week, often which would wake me from a sound sleep and not subside for an hour. These symptoms would be chest tightness, horrible trapped wind feelings, and bad abdominal pain. On top of that, and again, these never really went away but seem to continue to get worse, I have these feelings like everything is way too much effort, dizziness, foggyness, trouble concentrating, anxiety and total disinterest in doing anything other than sitting on the couch and watching TV after work and on weekends.  I've tried tons of different hollistic things to cure my acid reflux and malaise naturally but nothing has been effective.  I've never thought of harming myself and am still very interested in living, I just feel like life should "feel" better than it does to me. I'm 28 years old. I should "feel" better.  I should WANT to go hit a bucket of balls, not force myself to go do it. I find that when I do force myself to do things, I feel like complete and total crap, until I've been doing it and my body has been working for a while....then I start to feel better, but it is so tough to get myself to that point because I feel so terrible during.

 

Anyway, earlier this year, I was unable to eat anything for a month.   I woke up with one of those heart attack mimicing bouts, and decided enough was enough and went to the ER.  I got the full GI workup and pretty much a full body check up - everything came back fine.  So I went to a new and well respected Gastro for the first time in 10 years, and he performed an endoscopy and found that I had Esophinagus Esophagitis, which is basically a narrowing of the bottom of the esophagus and a loss of esophageal flexibility, due to allergy....which the reaction is being treat with steroids at this time. Basically, an allergen in my body that has likely be present for a long time has built up over the years and caused my esophagus to react in this way, and since the throat becomes hardened and not flexible and narrow at the bottom, everything you eat makes you feel like you are having a heart attack, which explains that.

 

Anyway, as I am being treated for that, I of course told my new Gastro that I was "misdiagnosed" with Celiac Disease 10 years ago.  He said, "Why do you think you were misdiagnosed? Your blood tests were all positive, multiple times."  I said, "Well because I never really had the instant doubled-over pain that lasts for hours or days when I eat gluten and the sigmoidoscopy showed that I had healthy villi.  He said, "Celiac has changed a lot in 10 years. Just because your villi are healthy and gluten doesn't completly double you over doesn't mean you don't have Celiac or at the least, a gluten allergy."  He said gluten intolerance can manifest itself in a huge spectrum of symptoms, and not everyone has the same, or one universal shared symptom.  Due to this, my gastro has ordered a fresh set of celiac blood tests.

 

So the other day I had a revelation.  What are the chances that I had been feeling just overall generally off and like there should be more to life and I should have an interest in doing more things and not always feel like complete crap all the time (dizzy, spacey, queasy, unfocused, cloudly, phobic, depressed, anxious, etc....) for the past 9 years because I started eating gluten again in 2003, thinking I didn't have Celiac, and nothing I do really fully takes those feelings away.

 

I don't have diabetes, but for anyone who does, and judging by how my uncle says he feels when he gets too much sugar...that feeling of just "blah, ugh, spaciness, disinterest, zoned out, don't want to do anything, "everything is too much effort" is how I feel.

 

I guess I am just wondering what the chances are that 1. This sounds like Celiac or gluten intolerance to you guys? or 2. If anyone has/had similar feelings while on gluten or when they consume gluten? I can say I've been more conscious of my gluten intake during the past week, and it may be placebo effect or coincidence...but I had beef, potatos, carrots and a non-alcoholic beer for dinner last night and felt decent enough vs. 3 slizes of palor pizza today and I feel like crap.  Not in pain, per say, mind you.  Just feel like total spacy disconnected queasy crap.


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kareng Grand Master

Well... Sounds like you had a horrible doctor! You tested positive and went gluten-free for 2 years. By then, the damaged villi would have healed. Then they looked at the wrong end for the Celiac damage.

Sounds like Celiac if you had positive blood tests.

guest134 Apprentice

The reason your biopsy was negative was because you were gluten free for 2 years before, unless you had refractory sprue there is no way your intestines would had not fully healed on a strict gluten free diet. 

When your new doctor speaks of your blood tests I wonder which ones were given. While the DGP is very sensitive and specific to Celiac it was not around when you were tested and it is now well known that the anti-gliadin is not an accurate test at all for Celiac. Also, when he says you don't need to have villi damage to have Celiac he is wrong. Perhaps he meant to say that the damage could be missed during biopsy or if the disease was caught very early before too much could be done? Celiac is the destruction of the villi which causes a wide range of nutrient malabsorption which in turn leads to all the possibilities of symptoms that Celiac can bring

It is not uncommon to have other issues along with Celiac so don't just assume all of your symptoms are due to one cause.

1desperateladysaved Proficient

I have high hopes that you will be feeling better soon.

Tiredsean Explorer

Curious how we have a similar story minus the positive celiac diagnosis.Im 37 and for the past 17 years I had major heartburn and heart palpatations as well as odd flare ups of fatgue etc.I have also spent odd times where I'd go a week or two in an anxious mode then a week or two angry ,then a week or two depressed.All for no good reason,I have a stable life for the most part.Only this year can I honestly say has been pure hell.It all started as chest tightness and back pain and has now flourished into body wide pain that cones and goes (not fibro tender points) more like muscle knots that come and go.Pain in face and jaw,sinuses, major sinus items like post nasal drip,photophobia etc.Since I've taken probiotics I don't get heartburn as much but loose stools etc and gas.After tons of tests,endoscopy,echo scans of abdomin,kidneys,mris of spine,neck etc and sooooo many blood tests including diabeties thyroid,hepatitis ,red/white cells and god knows what else,nothing came back negative.Ive been off gluten since January (not sure if st hubert restaurant BBQ sauce is gluten free), off soy , most sugars etc .still feel the same.So I sympathize with you and am interested in your development if you get better.In your case because you tested positive I'd suspect your problem is still celiac and always has been.Your certainly on the right site for information lots of good ppl here

dilettantesteph Collaborator

I'm guessing that the reason you didn't feel all the way better while gluten free was that you were still eating gluten somewhere.  There has been a lot of progress there too in the last 10 years.  I hope that you get your life back.

GFinDC Veteran

Hi CE,

 

Welcome to the forum! :)

 

If you had celiac before you still have it now.  People don't get over celiac disease.  It is a learned immune response by our bodies.  There isn't any un-learn mode for the immune system.  That's why you can get a vaccine shot in your childhood and still have immunity many years later.

 

When you stop eating gluten the immune response slows down and eventually stops.  That's because you removed the trigger for the immune response, gluten.   With the immune response in park mode your gut can heal.  So a test for celiac disease after going on the gluten-free diet is usually not any use.  It depends on how long after starting the gluten-free diet though, and how long it takes for each person's body to drop the level of antibodies and heal etc.  We aren't all the same.  But two years is plenty long enough for the immune system to "park" it's antibodie production and the gut to heal, in most cases.

 

Sometimes people go in for repeat endoscopies to monitor their progress on healing.  But it never is a "repeal" of the celiac diagnosis, no mater how much they have healed.  Any time the immune system detects gluten in the diet it will get all worked up again, produce more antibodies,  and start to fight the gluten invaders.  That's when the damage is done to your body.

 

Damage to the villi lining the small intestine prevents proper nutrient absorption into the body.  The vitamins and minerals just go right through and  your body doesn't get them.  So lots of different symptoms related to vitamin deficiencies can occur.  Anxiety, anger, depression, fatigue, plus many other symptoms.  So it's not surprising you don't feel well. Your body is being starved of essential ingredients it needs to function.  Celiacs tend to have the most trouble absorbing the fat-soluble vitamins.  Taking lots of extra vitamins only helps a little because they pass right through also.  Some people find sub-lingual vitamins helpful or even vitamin shots.

 

If you can switch your diet around to a healthy gluten-free diet it should help though.  It won't be an immediate resolution of all your symptoms, but it will start the process.  Eating simple whole foods that you cook from scratch yourself is a great way to get the gluten out of your diet.  Often enough people report worse symptoms after starting the gluten-free diet that last a little while.  It takes some time for our bodies to adjust to eating differently and for the bacteria to adjust in our guts.  That doesn't mean the gluten-free diet isn't working, instead it means the gluten-free diet is working.  You may need to cut out dairy for a while.  Some people can eat it with no problems but others have lactose intolerance for a while.  The enzyme that digests dairy sugar (lactase) is made by the villi.

 

Since you are an engineer you probably like pictures.  Take a look at the link below and read about villi in the small intestine.  It has a nice picture of them. :)

 

Open Original Shared Link


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CiscoEngineer Newbie

Thanks for your replies guys. Unfortunately I am uncertain what blood tests I was given, but I know I had it done 2-3 times and it always returned positive.  But again, I must stress, I do not get the crippling doubled-over pains that are apparently textbook of Celiac when I eat gluten. I just feel like crap for a while.  He did order three, compared to my two, from a decade ago, however.  I should also mention that I am fructose intolerant.

 

Wow, I can't believe my last doctor. Perhaps I could chalk that mistake up to people not fully understanding Celiac over a decade ago? Or maybe since I was a kid, he didn't want me to go through a procedure like that and figured he's spare me the discomfort and try the non-gluten for a year first?  So it is wholly possible that my villi could have been damaged ever since....but because I had the sigmoidoscopy years after restricting gluten, it turned up healthy.  I am completely stunned. Thank you guys for bringing this up.  He really never was a great doctor, to be honest. I mean, when I was a kid, I didn't know any better, but looking back now, he always gave off the vibe that this was his job and it funds his personal life. The doctor I am seeing now was 2012's best gastro in the county.

 

Question: What if I just have gluten sensitivity and not full celiac? Would the villi still show damage?

 

Question: How long does it take for villi health to return to the point that you wouldn't be able to confirm celiac? I assume it is less than 2 years? I just can't for the life of me fathom a screw up that big, so I am going to retrace my records and see if he was really that oblivious.  Let's say for the sake of argument, I am not remembering correctly, and I was gluten free for 6 months? Half a year.  Would it be fully healed by then, or untraceable?

kareng Grand Master

I just want to clarify something - an endoscopy diagnoses Celiac (in the upper/ small intestine). A sigmoidoscopy/ colonoscopy does not diagnose Celiac. It is in the last part of the large intestine. Not only would you have had no damage because you were gluten-free, but the doctor did not look for any Celiac damage.

kareng Grand Master

Don't just take our word for it, look at what the doctors who study and treat it daily say.

Open Original Shared Link

"Do those with non-celiac gluten sensitivity run the same risk of damaging their villi if they eat gluten?

No. Celiac disease is an autoimmune disorder where the body acts to destroy it’s own tissues. Non-celiac gluten sensitivity has no known association with an autoimmune reaction and typically results in gastrointestinal symptoms, like IBS, fatigue or headaches."

Open Original Shared Link

"For many people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within weeks of starting the diet, and the small intestine is often completely healed in 6 to 18 months. Healing may take up to 2 years for older adults; for some, the gut never completely heals but heals enough to restore quality of life and prevent complications due to active celiac disease."

shadowicewolf Proficient

Celiac symptoms are as vast as anything else. One little bit will cause some people lots of pain and while others may not feel a thing. Just because you barely felt anything does not mean that you do not have it.

CiscoEngineer Newbie

Wow.....I am stunned. You guys have given me a ton of great info and things to think about. I can't believe I could have had this all this time. I've been going crazy trying to figure out what is making me feel like general crap and I could never find it. I hope I am on the right track.

 

GFinDC, I actually try very hard to take supplements. I take Green Powder Superfood Drink Mix, Vitamin D, Probiotic Pearls and Digestive Enzymes with my meals...but as you said, they rarely make me feel great. I mean yes, I feel a little better with the initial rush of vitamins being processed, but it is no where near how I would imagine these supplements are supposed to make you feel. Also, it's a bit gross, but often times my stools do look very rich, as if the nutritional content is being expelled with the waste.  My bowel movements also don't usually smell very bad, or smell at all, even....so not sure if that goes along or against with the theory. Perhaps the high nutrient content potentially still in the stool prevents that or lessens it?

 

I must stress, however, that while I do appear to have just about every symptom of Celiac and/or Gluten sensitivity, I don't have what many call the textbook symptom, or at least what they called in 10 years ago - the crippling, horrifying stomach pains that put you on the ground for hours to days after ingesting gluten.  I have stomach discomfort pretty much daily, but it isn't so crippling that I can't move.

shadowicewolf Proficient

Wow.....I am stunned. You guys have given me a ton of great info and things to think about. I can't believe I could have had this all this time. I've been going crazy trying to figure out what is making me feel like general crap and I could never find it. I hope I am on the right track.

 

GFinDC, I actually try very hard to take supplements. I take Green Powder Superfood Drink Mix, Vitamin D, Probiotic Pearls and Digestive Enzymes with my meals...but as you said, they rarely make me feel great. I mean yes, I feel a little better with the initial rush of vitamins being processed, but it is no where near how I would imagine these supplements are supposed to make you feel. Also, it's a bit gross, but often times my stools do look very rich, as if the nutritional content is being expelled with the waste.  My bowel movements also don't usually smell very bad, or smell at all, even....so not sure if that goes along or against with the theory. Perhaps the high nutrient content potentially still in the stool prevents that or lessens it?

 

I must stress, however, that while I do appear to have just about every symptom of Celiac and/or Gluten sensitivity, I don't have what many call the textbook symptom, or at least what they called in 10 years ago - the crippling, horrifying stomach pains that put you on the ground for hours to days after ingesting gluten.  I have stomach discomfort pretty much daily, but it isn't so crippling that I can't move.

Again, symptoms vary with each person. Just because you aren't textbook, doesn't mean that you do not have it. In fact, there is a percentage that are not.

jhol Enthusiast

hi cisco, and tired sean,

 

both your symptoms are virtually the same as mine- not all "celiacs/gluten intolerants" have the same symptoms. mine were lethargy, anxiety ,depression, repetitive thoughts, joint pains and many more little niggly symptoms that seemed really trivial( absolutely NO stomach or gastro problems at all .

i used to look at people who were happy and laughing and think to myself- what are they so happy about? the story they,re telling isnt that funny!, why dont i think it really funny? why arent i rolling about laughing like everybody else?? why is everybody elses meal fabulously gorgeous and amazing and mines just ok !! i just didnt get it , and have many times been described as "sullen" and "miserable"( even had problems at work)  i did used to think i was from another planet  or born in the wrong time lol.

i tested negative on all my tests except for reflux- something id put down to "middle age" and not bothered the doctor about.

i decided to go gluten and dairy free( jan this year) rather than take the medicines id been described.

one week in my joint pains had lessened tremendously, no repetitive thoughts at all and only one reflux reaction to a strawberry smoothie.

i cant say its all been smooth sailing - other intolerance's have been popping up - think i may have a problem with nightshades. but at least mentally im in a better place.

i have read on here somewhere- dont know how true it is though ,that if you dont suffer with the gastro symptoms you can be more sensitive to lower levels of gluten( as in some of the pre-packed gluten free products) . please someone correct me on that one if ive got it wrong.

hope you finally get the results you need and get yourself sorted.

CiscoEngineer Newbie

jhol & Shadowice,

 

Thanks for your replies guys.  Also, my apologies about my repetitiveness with stressing the textbook symptom. I did not see you guys already addressed that above.  That makes me feel better that it doesn't necessarily have to be like that.  Jhol, very glad to see someone else has the same issue...I mean, I'm NOT glad that you are suffering, but I am glad that I'm not alone, lol.

 

The good news is that returning to this world after 10 years, it seems infinitely easier to manage having a gluten problem than it was a decade ago. I remember in the past when I wanted to go out to eat, I would have to ask the manager what had gluten, and since he didn't know he would give me the address of corporate, and I will have to write a letter to them to get answers, and etc etc etc.....  It was like having a 2nd full time job, honestly.  Now it seems most places have a gluten free menu, which is great.

 

Question: Do you feel worse if you have a lot of gluten than you do if you get a little? Or is it pretty much the same regardless of amount?

jhol Enthusiast

to be honest i havent tried doing a proper gluten trial yet, im waiting til i get a few days off work - just in case.

 

i have accidently glutened myself a few times, once with a tin of curried beans and the only symptoms were going icy cold and shivering ,feeling a bit spaced out, feeling really tired an having to go to bed early. im more of a night owl than an early bird lol, but as i said i dont have the stomach problems. pretty mild compared to others reactions, so i dont know exactly how much gluten was in the food i ate or if the amount even matters. apparently the longer you are gluten free you can have more severe reactions.

so sorry cant really answer your questions coz i really dont know myself.

my main symptoms now is the joint pain and that does come back if i eat the wrong things- potato,s i think but im still testing it out...

GFinDC Veteran

Hi Cisco,

 

A little or lot of gluten symptoms?

 

I can't answer for myself since I haven't eaten a lot of gluten in over 5 years since I started the gluten-free diet.  But  a little does cause me symptoms that aren't real fun.  Trying to compare your symptoms to others is somewhat iffy although perfectly normal to want to do.  It is a way to help understand what's happening to yourself and others.  The thing is, with celiac disease there is a whole universe of possible symptoms and reactions, so yours may match 1% of the celiac worlds people symptoms and not any of the 99% others symptoms.

 

GI symptoms vs none?

Some people have what they call "silent celiac".  They have no symptoms at all.  Usually their celiac disease is discovered almost by accident.  Probably most times it is never discovered.  Not having symptoms doesn't mean their bodies aren't being damaged though.  They are.

 

Stool color and consistency?

We had  a thread some time ago about stool color.  A very exciting topic indeed! :D  The colors people reported were yeller, green, black, white,  and I think there was fruity tooty polka dot one in there somewhere.   It was quite variable.  Green can be a gallbladder issue, or too much iron, red is blood in the colon, black is blood in the small intestine, white is fat mal-absorption, yeller is something I don't remember.  Well, I think that is half right anyway.  Best to look it up though,  There are listings on the WWW.  Consistency is all over the board also.

 

Gluten ataxia and other symptoms

You didn't ask about this but is something you should be aware of.  Gluten ataxia is when the gluten antibodies attack the brain and people develop problems with muscle coordination and other things.  Sometimes these people have no GI symptoms at all.  Some people get joint pain or skin rashes DH (dermatitis herpetiformis), migraines, or muscle pain or other non-GI symptoms.  There are many, many possible symptoms, and they aren't all in the gut.  Sometimes people also develop other autoimmune disease in addition to their celiac disease.  If you search the web for "celiac related condition" or "associated condition" you can find lists.

 

NCGS and villi damage?

NCGS is still not well understood.  It was only confirmed to exist last year 2012.  What the long term affects of NCGS are on the body and the gut is unknown at this point.  There are no long term studies on it.  It seems to be a different immune system response from celiac though.  Celiac is a result of the adaptive immune system responding, NCGS is a response by the innate immune system.  How that innate immune response affects peoples gut over time is an open question.

 

https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

Some reader's digest condensed version tips are below.

 

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.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

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

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

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      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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