Beverage

@Soleihey,
Do get checked for thiamine deficiency.  Blood tests for thiamine deficiency are not accurate.  You can have "normal" levels in the blood, but still be deficient because thiamine stores inside cells are depleted. 
Thiamine deficiency can cause ataxia, tremor, muscle twitching, leg weakness, constipation, and slurred speech.  I had these symptoms and more that did not resolve with a one a day type vitamin.  I needed high doses of Thiamine to correct the deficiency.  Thiamine is safe and nontoxic even in high doses.  Pregnancy can deplete thiamine stores.  
Interesting Reading:
Thiamine deficiency disorders: a clinical perspective
https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Thiamine supplementation will help this "air hunger" .  It's known as "sailors' asthma" because sailors used to get thiamine deficiency at sea without fresh meat.  
Thiamine Hydrochloride supplements will help.  So will Allithiamine, so called because it is derived from plants in the Alum family, onions and garlic.  Benfotiamine will also help.  

Welcome to the forum, @Kwinkle!
Realize first that the B vitamins are water soluble which means excess is excreted in our urine and does not build up in our tissues like fat soluble vitamins do. So, there is little risk of toxicity with large doses of the B's. 
Second, if you start with smaller doses they may not be large enough to be therapeutic and so will not help.
So, my recommendation is to start with high potency levels. But you also need to realize that the B vitamins work in concert with each other. So, it may not be a good idea to just to dose up on one or two of them. It might create imbalance. It would be a better idea IMO to take a high-potency B-complex. Make sure all supplements are gluten free.
If you live near a Costco, Nature Made Super B-Complex with C is a good choice.

Thanks a lot Beverage. I am really happy for you that you made big improvements with B-12 and B-1.
I am currently taking the Methylcobalamin that you mentioned. It is really helping me with my fatigue, concentration, fears, and mild obsessive-compulsive behavior. My short-term memory is still worrisome. I cannot believe how many times I walk into rooms and completely forget why I am there. Or to jog my memory I have to intentionally walk into every room to see if there is something that actually needs to be done.
I want to start B-1 Thiamine today. I have been suffering from peripheral neuropathy but not just numbness and tingling in the extremities but nerves firing off all over the body. Over the last few years it is like their repertoire has expanded because sometimes the sensations are very soft, other times like little mosquito bites, and then sometimes swarms of bees buzzing under the skin in certain areas.
Yesterday, I was actually having a pretty good health day up until I ate smoked salmon. Quickly my nerve pain and activity went up at least 1000%. Apparently smoked salmon has sulfites which destroy thiamine. So that explains why I was in pretty bad shape right after consuming it.
Hopefully a high dose of B-1 Thiamine will help with other things too like memory, ability to handle stress, and more.
It is a tough pill to swallow sometimes because just like celiac disease certain vitamin deficiencies like B12 and B1 are not always the first thing family doctors think about. And I would imagine a lot of other celiacs, especially undiagnosed, have been suffering just like us with a lot of these symptoms. They do say strength and wisdom comes from struggle. That helps me in trying to make sense of all this.

I am now experimenting with another B vitamin...niacin. Naturopaths have long recommended the flushing form of niacin (nicotinic acid, not nicotinamide) to clear out atherosclerosis. My boyfriend has that really bad, had a heart attack and 4 way bypass, so we were trying it for him, and I started with it also.
I read some studies about flush niacin and some about melatonin as preventatives for Covid, used together, it's kind of amazing.  Also used in recovery after vax for those that had issues, and recovery for people that got Covid and have lingering problems (aka long haulers).  Covid apparently messes with tryptophan, which is part of the melatonin conversion.  This combination seems to be helping a lot of people.  I believe I have read people taking it for the nerve side effects with long haul Covid.  
I have not had Covid, but am trying it for prevention and overall health.  My BP has been improving with the other B vitamin things, but generally around 120's / 70's.  Last night it was 116 / 69 and I felt really relaxed like I used to when I was a young whipper snapper, and sleep is improving.  I've tried it off and on since June, but had some hard times with my kitties getting sick and having to put them to sleep 2 months apart. 
I am trying it again now consistently.  For some they take right before bed and they sleep amazingly.  That didn't work for me, I have problems taking B vits anytime after breakfast, can't sleep, like someone holding my eyes wide open.  My friend suspects I have that MTHFR thing (problem with energy into cells and can get agitated when the energy is not used properly).  So before breakfast or just after, I take the melatonin first, wait 10 minutes, then take the flush niacin.  Amazingly, the melatonin does not make me sleepy at all when done with the niacin.  I must say, I am feeling another boost up in energy, more than anything else I have tried. I am 65 and shoveled 3/4 yard of gravel yesterday, was not exhausted after, just a little tired, and not even sore today.
My friend that has MTHFR suggested the addition of Liposomal Glutathione for that. So that's what I'm going to try adding next.

My D was always low. It got better with gluten free diet, but was always below range or barely in range. I tried increasing D vitamins, found that K2 helps absorption of D. It improved a bit, yet remained on low end of ok range. After covid and bad flu years, i really wanted to get my D way up.
We live in the Pacific Northwest, do lots outside 3/4 of the year, but sunshine is not abundant here in winter, when you are covered up anyway.
I finally bought a vitamin D lamp. I doubt that the cheapie ones sold on places like Amazon are effective.
Sperti makes one that uses florescent tubes, but I went with the Chroma LED Vitamin D lamp. They're not cheap, but I'm feeling a big difference. I haven't had my D levels checked yet since starting it this winter, but my hair has been growing in thicker like crazy, which is a sign of good D levels. Also, in spite of being around a few people who were ill, we haven't been sick with cold or flu...knock on wood.
You will need more D than what is in your milk. Take a good high dose D3 and make sure it includes K2, or take a separate K2 at same time as D. I've been taking Life Extension Super K.
Vitamin D needs acidic stomach to absorb, so don't take with anything that suppresses stomach acid.
Get more sunshine 🌞
If all that doesn't get your D levels up, consider a vitamin D lamp, which I consider the best investment I ever made.

My D was always low. It got better with gluten free diet, but was always below range or barely in range. I tried increasing D vitamins, found that K2 helps absorption of D. It improved a bit, yet remained on low end of ok range. After covid and bad flu years, i really wanted to get my D way up.
We live in the Pacific Northwest, do lots outside 3/4 of the year, but sunshine is not abundant here in winter, when you are covered up anyway.
I finally bought a vitamin D lamp. I doubt that the cheapie ones sold on places like Amazon are effective.
Sperti makes one that uses florescent tubes, but I went with the Chroma LED Vitamin D lamp. They're not cheap, but I'm feeling a big difference. I haven't had my D levels checked yet since starting it this winter, but my hair has been growing in thicker like crazy, which is a sign of good D levels. Also, in spite of being around a few people who were ill, we haven't been sick with cold or flu...knock on wood.
You will need more D than what is in your milk. Take a good high dose D3 and make sure it includes K2, or take a separate K2 at same time as D. I've been taking Life Extension Super K.
Vitamin D needs acidic stomach to absorb, so don't take with anything that suppresses stomach acid.
Get more sunshine 🌞
If all that doesn't get your D levels up, consider a vitamin D lamp, which I consider the best investment I ever made.

@ABP2025,
Here's some studies and articles that will help you learn more about thiamin and all... I will write more later.
https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/
And...
Thiamine and benfotiamine: Focus on their therapeutic potential
https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
and...
Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial
https://pubmed.ncbi.nlm.nih.gov/31746327/
 
 
 

@DayaInTheSun,
Have you been checked for nutritional deficiencies?  The gluten free diet can be low in the eight essential B vitamins.  Most Celiac are low in Vitamin D, which helps calm the immune system.  Thiamine (Benfotiamine) helps calm mast cells so they don't release histamine at the slightest provocation.  Taking a B Complex and Benfotiamine will help.  
P.S. Covid can deplete Thiamine stores.  Physical stress, like an infection or injury, as well as emotional stress, require more Thiamine.  

Hi @DayaInTheSun
Welcome to the forum!
I've been a Mod on this forum for some years now and your feelings are shared by many of us.   
I am not sure how long you have been diagnosed, but in my own case I do find that time has helped.  It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac disease and what it entails, either because they've hung around me long enough or have got to know other coeliacs who have educated them.  Also, two of my close friends are coeliacs and another has become allergic to yeast and with that has developed a shed load of other intolerances, so we either cook for each other or tend to socialise over coffee or just a visit to the pub, or meet for a picnic.
I now have found a few trusted restaurants and pubs where I can relax and enjoy a meal.  But I would never risk this without a bit of research first, looking at online reviews and preferably asking friends for their personal recommendations. If I am not sure, I don't take any chances and eat before I go out, just saying to the staff, "I'm not eating, but I'll order a drink" without any explanation.  I actually find that much easier than saying, "I'm a coeliac" because they then try to persuade you to try their gluten free menu which can be a bit hit and miss. 
I hope others will chime in but I just wanted to reply to say you are certainly not alone in this.  I do hope that over Christmas you will find a few treats you can eat at home.
Cristiana
 
 

Welcome to the forum, @Newhere19,
I agree with @Beverage about getting a DNA test for Celiac genetic markers and trying the gluten free diet.  
An endoscopy would be able to check for visible damage and allow biopsies to be taken to examine for microscopic damage.  
Some people have camera endoscopy.  Would this be a possibility?  
Sending encouragement.  You've found a tribe that understands.

Sounds like you're very careful with food.  Any possible airborne or non-eating exposures?
One time I got really sick from feeding my neighbor's chickens, the feed would get kicked up and I'd inhale the dust, read the ingredients, yup gluten. Another time we were doing some home remodeling, removed some old plaster, probably gluten in that. Anything like that?  Anybody lip kissing gluten eaters?  Any contact with pets that are eating gluten?  Body products like shampoo and lotions? 

Oh gosh. I remember being shocked when my new doc said he thought I had Celiacs (went in bcuz kidneys were failing, no intestinal issues), but relieved at first to find an explanation for my issues.  Then as I hit the library and the internet and read up on Celiacs, I got sooooo depressed and overwhelmed.  Funny you say "is it an italian thing?" ... I'm not Italian, but half Portuguese, so we're both full of fire.
I had to keep repeating in my head something my Mom used to say (she had been raped as a teen, got pregnant from it, forced to marry the bastid, he beat them, she finally got away, married my dad years later and had a wonderful life full of love and lots of laughing), she would say "it's not what happens to you in life, it's what you do with what happens to you in life, how you go forward"
So I finally accepted that this is what i have, everyone has something, and i will do what i have to do to get healthy and will probably end up living longer and better in the long run. 
Start with your home, clean the kitchen from top to bottom. Read the info here on what to keep and what to toss, food and cookware, body products, just go through everything one at a time. You will get better at reading labels, it will be second nature.  Eat more whole foods, meat and veggies.  I remember running every dish in my house through the dishwater on the super cycle. It was probably overkill, but I felt better.
You will make mistakes and have set backs, but you will prevail and the fire in your soul will get you through.  The people here are so supportive, never give up. 

@PlanetJanet,
Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try.
Here are articles on these vitamins and pain relief...
Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review
https://pubmed.ncbi.nlm.nih.gov/35156556/
And...
Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review
https://pubmed.ncbi.nlm.nih.gov/33865694/

Thank you, trents and knitty kitty!  You have confirmed what I thought:  Clean living from a gluten-free perspective has meant basic tests would show low-to-no antibodies.
It was my doctor who was wondering if I even had it, based on these tests.  He's not a gastro-doc, but otherwise a kind and competent doctor. He seems genuinely interested in what it means to be celiac, and also seems only somewhat familiar with tests & protocols. Hey, at least he's open to learn.
Me, I never had a doubt.  I just wondered if these tests indicate that I'm doing a good job and the answer is Yes.  Hooray!
As for the concern over my high overall IgA, I recently injured myself helping a friend not die, and I have loads of inflammation in my lower back and hips at the moment.  Perhaps that is the source of the high IgA? Dunno.  I dragged a short 200 lb woman around her kitchen like a sack of potatoes as I repeatedly did the Heimlich maneuver (I am quite tall, so kinda had to pick her up). Successful after the 8th heave-ho, to our mutual relief. Good ol' Navy medical training came in good for something!  But later, after the adrenaline wore off, I was in paaaaain.
I wonder if another source was that I recently had a bad cold, like to the point of taking a COVID test (neg), which knocked me on my butt for a couple weeks. The tests came just a couple days after I was symptom-free. Could that do it?
My big takeaway:  I have done well in avoiding gluten.  So huzzah for that. Thank you both.

Welcome to the forum, @Travel Celiac!
The high total IGA does not indicate that your celiac disease is actively flaring up. Total IGA is not a test for celiac disease per se but rather is test given to determine if you are IGA deficient, which you are not. IGA deficient people will experience artificially low individual IGA antibody tests such as the tTG-IGA and can result in false negatives. 
The other question is why is your total IGA count high? That can indicate other health issues besides celiac disease so I suggest you research that question and also talk to your physician about it. Here is an article that explains the various tests that can be run to detect celiac disease and the significance of the total IGA test:
Having said all that, I gather that for some reason you are under the mistaken impression that, having been diagnosed with celiac disease some years ago, your recent antibody test should still show elevated levels if you actually do have celiac disease, at least when you have accidental gluten exposure. I think you misunderstand how this all works and what the testing is designed to detect. 
When someone has celiac disease, the consumption of gluten triggers an autoimmune response that, typically, causes inflammation in the lining of the small bowel. This inflammation produces specific antibodies that can be detected by serum testing specifically designed to look for these antibodies. Upon the onset of celiac disease, it can take weeks or months of consistent exposure to gluten for the serum antibody levels to build up to the point where they are detectable by the tests. Once gluten is  removed from the diet, inflammation begins to subside and antibody levels begin to drop. An occasional gluten exposure will not result in restoring antibody levels to detectable amounts once they have receded to normal levels after going gluten free. Again, it takes weeks or months of consistent gluten ingestion for the antibody counts to reach sufficient levels to produce a positive test result.
Yes, you still have celiac disease but it looks like from your recent tTG-IGA test result that you are doing a good job with the gluten free lifestyle.

Hi @jjiillee,
Call the doctors office and tell them about the improvement with gluten free diet.
Diagnosing Celiac Disease is as much an art as it is a science.  Many go 10 years of suffering various symptoms before finally being diagnosed.Most celiacs have vitamin deficiency, it is part of the diagnosis.  Especially vitamin D.  Ask for her to be checked.
In the long run, showing such improvement she would do best eating gluten free regardless.  She has positive blood and responds well to gluten free.  At the same time you and your family should consider GFD, even if you don't think you have symptoms.  About 40% if first degree relatives of a diagnosed celiac have undiagnosed celiac.  There are 200 non classical symptoms other than gastrointestinal.  In 1976 my son was diagnosed when he was weaned and his doctor recommended we all try.  In 2014 I was very sick and finally started GFD.  Improvement was quick, many lifelong symptoms I had been told were normal went away and I've spent the last 10 years undoing the damage.  Shouda, Coulda, Woulda.  
Are You Confused About Your Celiac Disease Lab Results?
 
 

@Matt13,
Your symptoms sound similar to the ones I had.  I had developed nutritional deficiencies, in particular, thiamine deficiency.  Gastrointestinal BeriBeri has all those symptoms and the fatigue was horrible.  
Quick field test from WHO:  can you rise unaided from a squat?   If you have a serious thiamine deficiency, you cannot stand back up after squatting.  Really cool test. 
Read for yourself the article below, compare the symptoms, discuss with your doctors.  Doctors can administer high dose thiamine via IV and you will improve very quickly.  I had improvement within an hour.  No harm in trying, process of elimination and all that. Thiamine is safe and nontoxic even in high doses.  
Thiamine deficiency disorders: a clinical perspective
https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/
Are you aware regular Ensure Plus contains dairy?  Are you aware Plant Protein Ensure Plus contains oats?  Just checking.  
Have you tried the AutoImmune Protocol diet?  Highly recommend.  
Check out my blog to read excerpts of my journey and my clueless doctors.
Keep us posted on your progress!

I've had dry eye symptoms.  The eye drops did not help me.  What did help was making sure I was consuming Omega Three fats like flax seed oil and olive oil, and taking essential B vitamins, especially Riboflavin, Thiamin, and Vitamin C, as well as Vitamin A, one of the fat soluble vitamins.  
Newly diagnosed Celiac can have trouble absorbing fats and absorbing B vitamins.  Most gluten free processed foods contain saturated fats which the body can't utilize. Gluten free processed foods are not enriched with vitamins like gluten containing products. 
The eyes make a film of healthy omega three fats which keeps the eyes lubricated.  Insufficient omega threes can show up as dry eyes.  Most newly diagnosed Celiac are low in Vitamin D, as well as Vitamin A, both fat based vitamins.  
Thiamin Vitamin B 1 and Riboflavin B 2 are needed for eye health and optic nerve health.  Taking a B Complex vitamin supplement is beneficial.  Since the B vitamins are water soluble, any excess that the body doesn't need is excreted easily in urine.  The gluten free diet is low in essential B vitamins because gluten free processed foods that replace gluteny breads are not required to have vitamins and minerals added to them in order to replace vitamins and minerals lost in processing as is required with gluten containing products.  
Other things that are helpful is to refrain from using highly perfumed products (hair care, body washes, deodorants, room fresheners, cleaning products, etc.).  These can dry out the eyes, too.  
Staring at computer screens can be detrimental because you STARE and don't blink.  The tear ducts that keep the eyes lubricated are in the corners of the eyes.  Take breaks from staring at the computer screen.  Look out of the corners of your eyes to the right and blink several times, then look to the left and blink to help the tears spread over the whole eye.  
My eyes have sustained permanent damage because of nutritional deficiencies.  My ophthalmologist and my doctors did not connect any of my health problems with nutritional deficiencies which occurred with undiagnosed Celiac Disease.  My optic nerve shuts down and I lose my vision if I spend too much time looking at computer screens, led lights, and TV.  My vision goes gray and dim.  It's much worse than "optic snow".  It can take  hours or days for my vision to return.  My ophthalmologist said my vision might not come back from that sometime.  My ophthalmologist said the flash rate, refresh rate, is registered by the optic nerve which gets over stimulated and shuts down.  The optic nerve uses lots of Thiamine.  Thiamine insufficiency will cause permanent optic nerve damage unless corrected promptly.  My thiamine insufficiency/deficiency was not corrected promptly and I have this permanent damage and light sensitivity.  I take Benfotiamine, a form of Thiamine that also is beneficial for healing the intestinal tract.  Riboflavin,  Pyridoxine B 6,  and Vitamin A are also needed for eye health.  
Thiamine insufficiency can also cause anxiety.  Thiamine and magnesium will relieve muscle cramps.
Talk to your nutritionist and doctor about supplementing with essential vitamins and minerals while your intestines are recovering. 
Hope this helps!  

I got an official diagnosis from a naturopathic doctor, based on: 1. Very high blood antibodies 2.dna test and 3. Response to gluten free diet. I'm in the United States and have had absolutely no push back ever.
My step granddaughter received an official diagnosis from an MD based on high antibodies blood test only. She's also in the U.S. and was told docs in U.S.are doing this more often now.
I'd try a different doctor if you can. 

I got an official diagnosis from a naturopathic doctor, based on: 1. Very high blood antibodies 2.dna test and 3. Response to gluten free diet. I'm in the United States and have had absolutely no push back ever.
My step granddaughter received an official diagnosis from an MD based on high antibodies blood test only. She's also in the U.S. and was told docs in U.S.are doing this more often now.
I'd try a different doctor if you can. 

Hello all
I am taking some time out from work today to make my annual Christmas cake along the lines of a tried and tested English recipe which means a fruit cake, with marzipan  and icing.   As usual, I've left it too late - we're meant to bake these things some time  in advance to improve the flavour.    I never remember.  But it never seems to matter!
I thought I'd share it in case any UK coeliacs still haven't made theirs and don't have a recipe, or any of my friends across the Pond want to try making one.  Do you make iced fruit cakes like this in the US for Christmas? - I have no idea!
I adapt it slightly as instead of fondant icing I make Royal Icing which sets hard and you can create exciting snow scenes with it if you can find any tiny model houses, churches and trees to put on it!  (my Mum used to do this).  
https://www.coeliac.org.uk/information-and-support/your-gluten-free-hub/home-of-gluten-free-recipes/1511804/
With thanks to the charity Coeliac Uk for this recipe.
Cristiana
 

Gotcha.  I'll give 100% gluten-free a whirl after my testing concludes.  I know the traditional endoscopy is the gold standard, but I've already had that done and it was normal, so my gastro wants to do a capsule endo to try to cover more surface area and see if she can see anything further than the traditional endo... If I do have Celiac, I just seem to be on the very early end, I think.

My best guess would be NCGS. Some experts in the field of gluten disorders believe NCGS can be a precursor to the development of celiac disease. Whether NCGS or celiac disease, the antidote is the same, total abstinence from gluten for life or at least until some scientific breakthrough occurs that allows those with gluten disorders to consume gluten. I think this is your next step, i.e., seriously committing to putting gluten in the rear view mirror of your life for good.

I'm new here so I'm not sure if I'm allowed to recommend doctors?  But I am in Manhattan and see Dr. Lauren Schwartz at Manhattan Gastroenterology.  I am still in the process of (potentially) being diagnosed and she has been wonderful.  She has experience in Celiac and has a very calming bedside manner.  I feel confident I'll get the right diagnosis with her.  Give her a try if she takes your insurance.  Good luck!