Relatively Healthy Male Celiac Who Wants A Cure

Waynish

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I'm posting my long-term health issues here as objectively as possible to see if there are any things that I missed:

-- Diagnosed by one doctor (other doctors didn't confirm) with rheumatoid arthritis at 13 when knees used to swell up. A few years later I could walk/run again without pain or swelling.
-- I was always thin / somewhat built and athletic and could never gain significant weight using any foods.
-- I had depression & brain fog throughout my teen years (the only way I can get similar symptoms now is if I eat gluten, so I assume it was because I ate that everyday)
-- If I have MDMA then it comes on in about half the time of anyone around me, and it lasts considerably shorter (I've tested this 3 times and it is consistent)
-- It is hard for me to go off of sucrose (mostly via chocolate and tea) for more than a few days at a time. Possible SIBO?
-- I consistently have a bit of gas (the pressure seems to originate around the spleen/pancreas).
-- Diagnosed with 'damp' and a "spleen & stomach" deficiency by 2 TCM doctors (their herbs do improve my digestion and energy stability)

Allergic to:
-- gluten (causes nearly every symptom on the list of symptoms for celiac's disease and Hashimoto's disease - takes at least 3 days to feel normal again after any significant amount)
-- milk (get mucousy and tired - might be a side effect of a celiac destroyed/gut. Cheese causes gas)
-- eggs (seemingly developed independently at the end of teen years - hives and racing heart if eaten for a few days in a row. The only other time I got hives like that was from 4h-50h after a vaccine a few years earlier - which I later found had chicken egg yolks as one of the ingredients.)
-- coffee (seemingly sensitive to caffeine, causes digestion issues / irritation / constipation)
-- seemingly more allergic to mold than others (lived in a moldy basement during my teen years).

I eat a lot of dark chocolate (and therefore a lot of sucrose - and seemingly the more sucrose I eat the more weight I lose). I've tried to overeat at every meal and it doesn't cause me to increase my weight - depending on what it was, it can reduce my energy. I've had a low PUFA diet for years now. I've been relatively gluten free for 5+ years, but it still sneaks in often in small amounts. For example, the amount of gluten that was in a recent great Japanese ramen place (I assumed the broth didn't have gluten in it) was enough to put me on my **** for a couple days and lose about 4lbs. Due to the above information I'm always working to "heal the gut" - but that never seems complete. However, very small exposures to gluten every week or so may be slowing down the recovery process - or causing it never to be complete after all of these years...

Questions, comments, suggestions... All welcome :)
 

Xisca

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I am off gluten and it should be your aim to be off 100%
Then gluten was not enough for me after a few years.... so there is more to do!

I was bad with dairies as well, mucus as well, and now I am ok because my guts healed somehow, but best of all, I have the right dairies where I live, goat, raw, well drained and natural rennet! This is totally different....

I still have guts problem, and it is difficult to follow peat about sugar because my guts react....
 
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Waynish

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Thanks Pet Peeve, but I thought that wasn't true... I'll take that into consideration and give it a try.
 

Pet Peeve

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Thanks Pet Peeve, but I thought that wasn't true... I'll take that into consideration and give it a try.

Yes, some people say it isn't true or that the study which it is based on is flawed, but it's been published a lot of places and if you read the comments you'll see that a lot of celiacs agree with the list or some of it. It helped me immensely, especially dropping the instant coffee which I now realise has given me problems for years. I buy gourmet whole beans and grind them myself in a burr grinder and use a french press, it tastes out of this world and I don't react badly to it. When you reintroduce stuff after a while it becomes evident when you react to something, not so easy to tell when you are constantly having bad reactions.

Btw, methylene blue can be incredibly helpful.
 
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Waynish

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Methylene blue for celiac? Can you expand on that a little? I'm happy to try that as well.
 

Pet Peeve

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Methylene blue for celiac? Can you expand on that a little? I'm happy to try that as well.

I don't know how methylene blue works but there seems to be some inflammatory reaction between the digestive tract and the brain that mb stops. I once ingested wheat by accident and a tiny amount of methylene blue completely eliminated the "glutening" in 15 - 30 minutes. I almost couldn't believe it. It seems there's another more chronic side to gluten intolerance/allergy though that takes longer to fix, and can only be achieved by avoiding certain foods - I think some kind of chronic gastrointestinal inflammation.

My own personal little theory is that gastrointestinal inflammation/irritation is a major health problem these days and that it comes from highly processed foods that people eat because the don't have the time to cook from scratch anymore. E.g. the way commercial fruit juices are made is shocking to me. And stress of course. I think it's the reason so many people have bad reactions to gluten nowadays. Gut gets irritated from processed food and then they can't digest gluten anymore. I think this is the reason behind why so many people think they have this or that, pyroluria, candida etc.

I think I found the gluten cross reaction study: Cross-Reaction between Gliadin and Different Food and Tissue Antigens
 

DesertRat

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Definitely go 100% gluten free. Did you ever see that Italian study "a mg of gluten a day keeps intestinal healing away?" After 6 mo - 2 years, if your sensitivity was caused by mold -- which is very common -- you may be able to tolerate gluten again. It's worthwhile to check out you HLA markers for celiac v. gluten sensitivity. These reactions can cause rheutamoid arthritis because the immune system gets turned up and the inflammatory cascade spreads. I had to go dairy free for 6 years, but now can eat as much dairy as I want with no symptoms. It may be that there are faster ways to do it; I suspect everything you do to increase the metabolic rate can only help the turnover and repair of intestinal cells, which repair quite rapidly. It's the damned memory of the immune system that'll get you every time.
 
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Waynish

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Thanks guys, I just have such an active life that I'm always out at dinners in random countries... I'm ever-more vigilant, and yes - it is like a few fried union shavings on the top of some sushi can change me for a day! Reading into that study now, Pet Peeve...
 

Blossom

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@Waynish, I'm celiac too. I've tried strict gluten free and being more relaxed and in the end I'm back to being strict. I wanted to be able to tolerate eating wherever and things that should be okay but I ended up harming myself.

I've experienced the immune system issues related to gluten that @DesertRat spoke of and it's real obvious for me and impossible to deny because I get the gluten rash (dermatitis herpetiformis).

I had what I believe is cross-reactions that @Pet Peeve wrote about when I first went gluten free in 2012. After Peating some years I no longer have that but I think it's just from being generally healthier.

I definitely feel more resilient after Peating but gluten still destroys me, it just takes longer for it to happen.
 
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Waynish

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Here are some updates from recent blood tests:

S-25-OH Vitamin D: 62 nmol/L
S-Prolactin: 3.4 ug/L
S-Testosterone: 11 nmol/L
B-HbA1c 29 mmol/mol
S-TSH, tyrotropin 1.3 mE/L
S-TPOAk, tyreoperoxidas-ak 44 H kE/L
S-TgAk, tyreoglobulin-ak <.9 kE/L
S-Deamiderate gliadin-ak (IgG) 6 kE/L

B-Leukocytes 6.0 10E9/L
B-Erytocytes 4.9 10E12/L
B-Hemoglobin 148 g/L
B-EVF .42
Erc-MCV 87 fL
Erc-MCH 30 pg
Erc-MCHC 348 g/L
Trombocytes 168 10E9/L
B-SR (EDTA) 2 mm
S-Creatinine 97 umol/L
Pt-eGFR(crea) relative 80 L
S-Sodium 138 mmol/L
S-Potassium 3.7 mmol/L
S-Calcium 2.39 mmol/L
S-Albumin 50 H g/L
S-ASAT .29 ukat/L
S-ALAT .15 ukat/L
S-ALP .91 ukat/L
S-gamma-GT .20 ukat/L
iron 21 umol/L
Transferrin 2.4 g/L
TIBC 59 umol/L
iron saturation .35
Urea .25 ukat/L
Pankreasamylase .25 ukat/L
Triglycerides .57 mmol/L
Cholesterol 6.0 mmol/L
S-HDL-Cholesterol 1.8 mmol/L
S-LDL-Cholesterol 3.7 mmol/L
S-LDL/HDL 2.0

House dust mites 4.6 H kE/L (looks like I'm allergic to dust mites... Not sure what to do about that)

My D is a bit low, so now I'm supplementing with vitamin D oil on the skin more than before. Obviously my testosterone is a bit low... It doesn't feel like it though 0_0!
If you all see anything noteworthy in here that I maybe missed, then I'd be curious. Not very complete tests, but that's all I have access to via my local doc at the moment. And no, wheat allergy didn't show up - but I know I'm celiac (I get every symptom on the list an complete recovery from an exposure takes ~5 days).
 

Blossom

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I'm celiac but tested negative for wheat allergy. This is what you need as far as blood work if getting a celiac disease diagnosis is important to you. You have to be eating gluten everyday for 2 weeks at least before testing.
Make sure you get the full celiac serum panel. This is it:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA




Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
GLIADIN IgG
GLIADIN IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
 

Pet Peeve

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The instant coffee was probably contaminated with gluten.

That's very possible, the thing is I get the same reaction from rice and a few more things. Maybe all these things are contaminated with gluten? It's certainly possible. I just wanted to make people who struggle with gluten aware that there might be other stuff than what you'd expect causing the reactions. I wish I had known a few years ago.
 
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Waynish

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I know you all want to stay on the side of coffee at all costs, but I went through a lot of trouble to vindicate my coffee sources. I got some of the best coffees in the world - and I loved them - but I still had the reaction. It wasn't really like a gluten reaction anyway.
 
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Waynish

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How sure can you be that I would not benefit from NDT or T3/T4 supplementation based on these numbers?
 

tara

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How sure can you be that I would not benefit from NDT or T3/T4 supplementation based on these numbers?
The TSH looks only a little on the high side, so I'd be considering things like body temp patterns and maybe achilles tendon reflex etc for more evidence.

It does look as though being really rigorous abot avoiding gluten could be really important for you. Not easy, I know. I know someone who gets badly glutened from time to time by food that restaurant/cafe staff assure him is gluten-free.
I also know people who regained their ability to eat dairy after strictly avoid gluten for quite a while (can't remember if it was at least 6mths or 1yr). As people have said above, even small amounts can set back the gut healing.
If your gut is never quite getting to heal, I wonder if you are struggling to keep well-nourished in other ways.
 
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Waynish

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Why would it be that all of these (combined or independently) give me the same reaction:
-- t3
-- t3 + t4
-- ndt
-- selenium
-- iodine

They give me tightness in the throat and/or the sensation that my thyroid is affected.

I've never taken any of them for any length and the only other thing that can give me this sensation seems to be gluten - but it is much worse than that and much more neck tension.
Any hypothesis on the cause based on these info? Would be interesting to hear from @haidut or @tyw :)
 

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