MrsTurner

No one wants you to leave. You are welcome here as long as you don't try to pass fringe concepts as gospel truth in a dogmatic, authoritarian way. Please realize that there are many who join this forum who are new to the celiac disease/Gluten sensitive world. They don't know enough yet to be able to evaluate the validity of information they may find here. The claims you made in your previous post are at odds with the mainstream science of the celiac disease/Gluten sensitive world and you should expect them to be challenged. I have tried to do this in a respectful way but if I have failed in that I owe you a sincere apology. 

From Dr. Alireza own words according to the last link you provide: "Did you know that oftentimes people will purchase rice thinking that they are eating well?  Even though rice is considered gluten-free based on the definition set forth by the FDA, rice does contain a form of gluten prolamin called orzenin.   In my experience, those with known celiac disease or non celiac gluten sensitivity issues always do better when avoiding rice."
A "form of gluten" is not the gluten that causes reactions for most celiacs and his extension of the term "gluten" in that way is a questionable journalistic tactic. Most medical researchers don't share his perspective on that. Most of us have no problem with those other grains. If eliminating them from your own diet has constituted a turn around in your health we rejoice with you. But please don't project your own anecdotal experience onto everyone else in the community. We have enough limitations on what we can eat already without needlessly eliminating other grains that don't do harm to most of us. Otherwise I have no problem with you sharing your own experience but it needs to be presented in that light rather than as a general prescription for all.
And all that stuff about the dangers of arsenic poisoning from eating rice is way over blown. If you research it thoroughly, it's mostly a theory that has little real life evidence to support it. And if there is any, it's only likely connected to riced grown in areas where the soil is high in arsenic to begin with or where they use fertilizer that is high in arsenic. And even then you have to eat copious quantities of it in order to get arsenic poisoning. What are the chances that you would consistently be eating rice grown in one area unless you lived there and it was eaten regularly?

I do not think this is true. They main contain protein chains that are similar to the gluten found in wheat, barley and rye but technically speaking they are not gluten. However, you do occasionally here of people referring to these similar proteins as "rice gluten" or "oat gluten" or "corn gluten". Strictly speaking, however, it is a misnomer.

It can take a long time to improve you guts with Celiace. Months to years. I've been gluten free for 15 years now. I've never really freaked out to much on pans, and cross-contamination because, yes, it drives you crazy. You'll always be getting some gluten somewhere. Remember rice and oats do contain gluten as well. I'd suggest sticking to monocot rather than dicot grains. (I use tapioca and garbonzo bean flour mostly) Yay, pizza!! lol
My endocrinologist suggested using 'Pancreatin" enzymes with food. If you are exposed to gluten it will help (and other bad molecules in food).
The vagal nerve actually goes from the stomach to the brain, not the other way around. Most of our serotonin, dopamine and other brain chemicals are created by the neuroenteric system (guts), and directly related to psychological well being. Feed the good microflora and not the bad and find a good balance.
Trying the FODMAP will help you pinpoint the bad stuff - you may be allergic to other food that continue to give you reactions.
Hope you feel better!!
Peace!! ; )

Hi Mrs Turner, sorry to hear about your anemia.  I believe I’ve had celiac my entire life. I am now 67. I am not a drinker, but celiac ruined my liver. I also have hemochromatosis. My iron levels were high. I had blood letting twice. It relieved my tiredness but I was still cold. My liver could not get rid of the toxins from my body. I ballooned up to 265 pounds. By the time I was evaluated for a liver transplant, I had 30 days to live. I received a Miracle 3 weeks later.  My weight dropped 130 pounds. This took a while. I became very anemic. One year post transplant, I was still a anemic. I was sent to get weekly Epogen injections. After 2 months, I’m feeling great! My blood counts are good, and I’m not tired all the time, and I’m not cold either! Have your hemoglobin numbers checked. I was told any thing over 11, I would not need an injection. Good luck to you, I sure hope this helps.

Hi,
I also find this resource so amazing 👏 Thanks to all.
I have had low iron stores for years (always put down to menstruation by doctors) and my resting heart rate averages around 56bpm. I was diagnosed with Celiac disease 10 months ago. Whilst doing some investigations into low iron this week, I found the following article that suggests that iron apparently does not deplete due to gastrointestinal bleeding in celiacs. Mant MJ, Bain VG, Maguire CG, Murland K, Yacyshyn BR. Prevalence of occult gastrointestinal bleeding in celiac disease. Clin Gastroenterol Hepatol. 2006 Apr;4(4):451-4. doi: 10.1016/j.cgh.2005.12.010. PMID: 16616349.
The only solution that works consistently to remedy shortness of breath, palpitations, chest pain and fatigue for me, is "Ferrinject" iron drips (on prescription) and Neurotropic B vitamins shot this morning. I speculate that the effectiveness could be because it goes directly into bloodstream. 
I would also very much appreciate specialist advice on best practice on managing malabsorption, as I have been diagnosed with low iron stores, low magnesium, low Vitamin B and D.

My understanding is that the anaemia does not come from intestinal bleeding, but rather from damage to the areas that absorb iron in the gut, so your ability to absorb iron from food is reduced. It can also lead to low calcium for the same reasons. I have had anaemia pretty much all my life, and was diagnosed as coeliac about15 years ago. I take iron every day and it doesn’t do much. I have recently been referred for iron infusion which I’m guessing is similar to your ferritin. This will work better because it is not relying on the gut to be absorbed. I also take a calcium supplement twice a day, which contains magnesium.

Low serum calcium is probably not due to malabsorption from celiac disease because the body will take calcium from the bones to keep serum calcium from dropping below needed levels. But malabsorption therefore certainly can result in osteoporosis. If serum calcium is low there is probably another metabolic problem at work.
The anemia may be due to malabsorption of B12 which is a precursor to iron uptake. It's called pernicious anemia. They can give B12 injections to correct this but you can also do it with mega doses of oral B12.

I just want to caution on anemia being always from iron deficiency. There can be other causes. I tested low iron for years and years, docs always telling me to take more iron, but it never improved.
It took until I was 19 years old in college to figure it out.  A young medical student in the student health clinic did additional blood tests that showed low in iron, but also lots of red blood cells but very small, less hemoglobin.  He was very methodical about giving me high dose iron, then testing again to see if the iron was doing anything...it did not result in any more or any larger red blood cells, no increase in iron levels. 
He got me a referral to a hematologist who spotted that I had thalassemia, an inherited anemia common in the Mediterranean area (my mom is Portuguese), and taking iron is actually detrimental as it is not water soluble and stores in organs and damages them.  I'd inherited it from only one side of my genes, so not very serious.  Treatment is to not take additional iron or too many foods high in iron, and nothing more to do. 
So just a caution to be sure it's iron deficiency before pouring a lot of iron into your body. If your doc is telling you to take iron and not following up with repeating tests to see if it does anything, then I strongly suggest you get a different doctor.

MrsTurner et Al,
You can't fix an Iron deficiency Anemia without finding out what the underlying cause(s) is?
Taking Iron by itself won't by itself help you......you need to find what other Co-Factors you are low in to help your Iron Absorption.
Two or three Common things is take your 1) Iron with Vitamin C and 2) treat your commonly co-morbid low stomach acid that occurs with Celiac disease (often)......3) take your Iron with a Zinc/Copper supplement as well because it is not commonly understood that Iron deficient Anemia is not an Iron problem but really a Copper problem instead.
See this article that explains why this is entitled "Its copper anemia not iron anemia"
https://www.bodybalanced.net/post/its-copper-anemia-not-iron-anemia
Also regarding your long term Iron deficiency.......when we get low in our stomach acid the body can no longer convert the Insoluble ferric iron Fe3 form to the absorbing ferrous iron Fe2 form.
Here is a nice article on it.....
https://www.ncbi.nlm.nih.gov/books/NBK448204/
Quoting from the Cellular paragraph on Iron absorption or lack there of....they note
Cellular
"The absorption of most dietary iron occurs in the duodenum and proximal jejunum and depends heavily on the physical state of the iron atom. At physiological pH, iron exists in the oxidized, ferric (Fe3+) state. To be absorbed, iron must be in the ferrous (Fe2+) state or bound by a protein such as heme. The low pH of gastric acid in the proximal duodenum allows a ferric reductase enzyme, duodenal cytochrome B (Dcytb), on the brush border of the enterocytes to convert the insoluble ferric (Fe3+) to absorbable ferrous (Fe2+) ions. Gastric acid production plays a key role in plasma iron homeostasis."
And without a strong stomach acid the Iron you are taking is never converted into the absorbile form needed by the body......and in large part why you have never been able to help your Iron deficiency anemia.
Also finally.....when you get low in Niacin aka Vitamin B3 best taken as the non flushing form Niaciamide you get low in Iron stores in the liver naturally.......this is important because Niacin is responsible in large part for the production of stomach acid and explains why when we get low in Niacin our Zinc and Iron levels also get low!
Here is the research on it entitled "Effect of nicotinic acid (aka Niacin) on zinc and iron metabolism"
https://pubmed.ncbi.nlm.nih.gov/9353874/
quoting from the astract
"When mice were fed with nicotinic acid-deficient, -adequate and -excess synthetic diets for four weeks it was observed that, in comparison with the nicotinic acid-deficient diet, percent zinc absorption, intestinal zinc, percent haeomoglobin and liver iron increased significantly under nicotinic acid-adequate and -excess conditions. The results obtained suggested that nicotinic acid (aka Niacin), in addition to its known effect on growth and metabolism, may be playing an important role in enhancing zinc and iron utilization."
I wrote a blog post on how to Niacinamide and why you would want to.....maybe it will help you to read it.
Most people won't take Niacin aka Vitamin B3 long enough to do them any good because it causes intense flushing for the approx. 30 minutes after you take it.... in higher doses but the good news Niacinamide has all the same benefits without the intense flushing....
The problem at least in "Brick and Motor" Stores.......Niacinamide is very hard to find.....but thankfully you can order it online readily and is the form I would recommend to you....
But note frequency is much more important than dose size when it come to B-Vitamins....as I explain in Faq on  how to take Niacinamide.......so take it frequently like 3x a day with meals for at least 3 months and you will notice a consistent and persistent burping a sign you are now digesting your food again......especially if you are  not now taking a PPIs or other Acid blocker/reducer......and bloating and indigestion was a common complaint before  you begin taking the Niacinamide......
I call it the Niacinamide Challenge.....it been shown to help digestive problems of all kinds because it restores our stomach acid to a healthy level again.  A healthy child will burp after 6 months and most GI healthy adults will burp again after taken Niacinamide 3x a day for 3 or 4 months.
See this abstract article about it entitled Niacin(amide) helps digestive problems!
https://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm
I hope this is helpful but it is not medical advise.
2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.
Posterboy by the Grace of God,

So, as a little update -
I started my gluten-free diet two weeks ago now.
Some things seem to be definitely improving:
decreased joint pain and swelling (I can wear my wedding ring for the first time in about 6 months!) less bloating, less wind, less constipation less rib pain  much less nausea (as in not constant) although I did wake up one morning feeling sick to my stomach and couldn't pin point why. The constant hunger I had at the start has definitely eased. However, some things aren't budging, or they seemed to get better at first and have come back again. 
Given that some things are markedly better, I do think I have a sensitivity to gluten, despite my negative test, so I'm now considering whether my healing just isn't a linear improvement, or perhaps I've been glutened in my first week? 
My husband and son aren't eating gluten-free and my in-laws visited at the weekend (because everything is so new it was hard to enforce things like them washing hands between touching bread and touching a cupboard door for example), so I think cross-contamination could have been easy. I'm also still eating gluten-free oats, dairy and corn, (and probably soy, but I haven't really checked) so my thoughts were to cut down on those as others have suggested there's a likelihood of sensitivity to those things too.  Other ideas I had considered were that the neurological symptoms might take longer to disappear than the gastro symptoms and general inflammation- or that the neurological symptoms may be due to underlying deficiencies , as so many people have suggested, so maybe they will just take longer to improve over time on the right supplements.
I will say, I feel quite anxious in these early days - scared to contaminate, always cleaning and washing hands etc. I've bought my own pans etc, but meal planning and cooking for the family and avoiding contamination has become a little stressful and I can feel it taking its toll.  Hopefully as time goes by things will become easier.
 
Just thought I would update anyway and say thanks to everyone who has reached out on my journey so far. It's all been very much appreciated. I've got lots to learn!

Thank you so much for all your advice!

So, as a little update -
I started my gluten-free diet two weeks ago now.
Some things seem to be definitely improving:
decreased joint pain and swelling (I can wear my wedding ring for the first time in about 6 months!) less bloating, less wind, less constipation less rib pain  much less nausea (as in not constant) although I did wake up one morning feeling sick to my stomach and couldn't pin point why. The constant hunger I had at the start has definitely eased. However, some things aren't budging, or they seemed to get better at first and have come back again. 
Given that some things are markedly better, I do think I have a sensitivity to gluten, despite my negative test, so I'm now considering whether my healing just isn't a linear improvement, or perhaps I've been glutened in my first week? 
My husband and son aren't eating gluten-free and my in-laws visited at the weekend (because everything is so new it was hard to enforce things like them washing hands between touching bread and touching a cupboard door for example), so I think cross-contamination could have been easy. I'm also still eating gluten-free oats, dairy and corn, (and probably soy, but I haven't really checked) so my thoughts were to cut down on those as others have suggested there's a likelihood of sensitivity to those things too.  Other ideas I had considered were that the neurological symptoms might take longer to disappear than the gastro symptoms and general inflammation- or that the neurological symptoms may be due to underlying deficiencies , as so many people have suggested, so maybe they will just take longer to improve over time on the right supplements.
I will say, I feel quite anxious in these early days - scared to contaminate, always cleaning and washing hands etc. I've bought my own pans etc, but meal planning and cooking for the family and avoiding contamination has become a little stressful and I can feel it taking its toll.  Hopefully as time goes by things will become easier.
 
Just thought I would update anyway and say thanks to everyone who has reached out on my journey so far. It's all been very much appreciated. I've got lots to learn!

So, as a little update -
I started my gluten-free diet two weeks ago now.
Some things seem to be definitely improving:
decreased joint pain and swelling (I can wear my wedding ring for the first time in about 6 months!) less bloating, less wind, less constipation less rib pain  much less nausea (as in not constant) although I did wake up one morning feeling sick to my stomach and couldn't pin point why. The constant hunger I had at the start has definitely eased. However, some things aren't budging, or they seemed to get better at first and have come back again. 
Given that some things are markedly better, I do think I have a sensitivity to gluten, despite my negative test, so I'm now considering whether my healing just isn't a linear improvement, or perhaps I've been glutened in my first week? 
My husband and son aren't eating gluten-free and my in-laws visited at the weekend (because everything is so new it was hard to enforce things like them washing hands between touching bread and touching a cupboard door for example), so I think cross-contamination could have been easy. I'm also still eating gluten-free oats, dairy and corn, (and probably soy, but I haven't really checked) so my thoughts were to cut down on those as others have suggested there's a likelihood of sensitivity to those things too.  Other ideas I had considered were that the neurological symptoms might take longer to disappear than the gastro symptoms and general inflammation- or that the neurological symptoms may be due to underlying deficiencies , as so many people have suggested, so maybe they will just take longer to improve over time on the right supplements.
I will say, I feel quite anxious in these early days - scared to contaminate, always cleaning and washing hands etc. I've bought my own pans etc, but meal planning and cooking for the family and avoiding contamination has become a little stressful and I can feel it taking its toll.  Hopefully as time goes by things will become easier.
 
Just thought I would update anyway and say thanks to everyone who has reached out on my journey so far. It's all been very much appreciated. I've got lots to learn!

Omeprazole will have an immediate effect in lowering stomach acid. The real question is what effect will three weeks of lowered stomach acid have on other gut factors and other body systems. I would think nothing serious.

If you get the right bacteria it can help with your symptoms if the symptoms are caused by an autoimmune disease or by IBS.
It is easy to become deficient in Thiamine but other deficiencies are also possible:
https://onlinelibrary.wiley.com/doi/10.1111/jgh.15830
Pectin (a soluble fiber):
https://pubmed.ncbi.nlm.nih.gov/25809332/
Acacia gum:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077585/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435782/
Guar gum:
https://pubmed.ncbi.nlm.nih.gov/16413751/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6769658/
https://open.library.ubc.ca/soa/cIRcle/collections/ubctheses/24/items/1.0378179
If you get the right fiber and bacteria and take probiotics to boost short chain fatty acids I think it is likely to help limit yeast overgrowth or inflammation in other parts of the digestive tract. The ITIS diet is a modified Mediterranean meant for helping with RA. It was tested successfully on a few people and now they are doing a larger clinical trial. It also reduced fatigue though and other symptoms associated with it. It is kind of similar to the aip diet but also different. It included Chia seeds and fruit and vegetable smoothies and soups as sources of fiber.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997513/

I can't speak to the effect of childbirth but I was so anemic, I was having heart palpitations, which led to the Celiac diagnosis for me 20 years ago. I worked with a hematologist to build my iron back up and one thing they told me is to take carbonyl iron. It's more readily absorbed. Also, take it with an acidic beverage like orange juice to increase absorption. They thought it would take six months to get to normal but I managed it in three months with Feosol carbonyl iron and eating spinach a lot.
I was deficient in B-12 and folic acid at that time and had been on prescription acid reduction medication, which was no longer needed when I went gluten free. They don't tell you that the acid reducing drugs cause B-12 deficiencies but they do. Hope some of this might help you get back to normal levels so you can keep up with your baby. 🙂
 
Congratulations, BTW!

Wow, Thank you so much for taking the time to write such a detailed response!!!
I get written off as a hypochondriac with anxiety at every appointment, so it's comforting to hear I'm not alone, although I do hope you are feeling well again now!  My GP can't even speak to me until the 19th July for a phone appointment, even with all the symptoms and concerns I've mentioned above- it's not that important (If they had to live with it I'm sure they'd see the other side).  I've bought some OTC B Vitamins and Vit D, and I'm already taking iron and Vitamin C so if it is based on deficiencies I'm hoping they are strong enough to start doing something until I can get some sort of response from the GP about it. 
I've lost all faith in medical professionals though now. None of my Drs suspected anything to do with Gluten either - it was me who researched for weeks and weeks non stop and asked for the test and now the diet seems to be working, to a degree, but obviously there are still things happening, and deficiencies might just make sense.
Thank you! 

These are all symptoms of Thiamine deficiency.  Thiamine can only be stored for three weeks.  We can experience thiamine deficiency in as little as nine days.  Our bodies need more thiamine when we are ill (like with Covid) or pregnant, are under emotional stress, or are outdoors in hot weather.  
Vitamin D deficiency and deficiency in Omega Threes can cause achy joints.
Thiamine deficiency can cause neuropathy.
Thiamine deficiency symptom.  Our brains use as much Thiamine just thinking as a marathon runner's muscles do during a race.
 
Thiamine is needed for peristalsis, those automatic contractions of the digestive system that moves food along.  
The ribs are connected by flexible cartilage to allow for expansion as during pregnancy.  Healthy Omega Threes, Vitamin D, and Thiamine are essential for this.
Frequent urination with retention is a symptom of B12, B6 Pyridoxine, and Thiamine insufficiencies.
These are symptoms of Thiamine deficiency.  Every single cell in our bodies need thiamine.  As the body gets more deficient, it tries to use less thiamine, so heart rates can drop, or conversely, tachycardia can occur.
Deficiencies in several of the B vitamins can produce neuropathy (pins and needles) including B12, B6 Pyridoxine, Niacin B3.  
Thiamine deficiency can affect the tendons causing Plantar fasciitis, Carpal tunnel, and De Quervains.  
With De Quervains, keep your thumb parallel to your fingers when lifting children or other heavy objects.  Scoop things up with your thumb parallel to your fingers.  I had this myself because I lifted my son with my thumbs out like you would put your hands if holding a bowl of soup.  Don't!  Cup your hands with your thumb in line with your fingers.
Vitamin D deficiency can cause hormone irregularities.  Vitamin D itself acts as a hormone if proper levels are maintained which is above 80ng/mol.
Thiamine deficiency can contribute to pelvic pain and cramping.
Thiamine deficiency causes "sailor's asthma".  This air hunger occurs because Thiamine is needed for the proper oxidation of the blood.  B12 deficiency can also cause breathlessness.
Thiamine deficiency manifests in ataxia because the cerebellum which controls our balance and automatic nervous system, and the vestibular system in our ears for balance are highly sensitive to Thiamine deficiency.  
Dysphagia, difficulty swallowing, is another symptom of Thiamine deficiency.
Thiamine deficiency can cause slurring of speech.  It can go along with dysphagia.  Thiamine deficiency can get so severe as to lead to Wernicke's Encephalopathy which involves ataxia...
Thiamine deficiency can cause anorexia, loss of appetite, and also conversely, a ravenous appetite.  
Constipation or conversely diarrhea can be symptoms of thiamine deficiency.  
Belching, burping, wind can be the result of Small Intestinal Bacterial Overgrowth.  The bad bacteria feeding on undigested starches produce this gas.  
SIBO is seen in Thiamine deficiency.  Thiamine is needed to keep the bacteria from overgrowing into the small intestine.  Without enough thiamine to keep them in check, the bad bacteria party like there's no parental supervision.
Night sweats can be caused by low Vitamin D and B12 deficiency.
Nightmares can be caused by low magnesium.  Magnesium is necessary for Thiamine to function properly.  
Thiamine deficiency is needed to regulate Mast Cell degranulation and histamine release.  
Thiamine deficiency can affect the appetite causing anorexia (no appetite) or causing a ravenous hunger.  
Remember after cutting out gluten products, you are no longer consuming the vitamins and minerals that are added for enrichment to replace the nutrients lost in processing. Your body is signaling your brain it needs more vitamins so the brain signals you to keep eating.
High carbohydrate loads can cause an increase in blood glucose levels which can make us feel foggy or light headed after eating.  
Thiamine is needed for digestive enzymes and insulin made in the pancreas.  Without sufficient Thiamine, our blood glucose levels may take longer to return to a lower fasting level after eating high carbohydrate meals.  Postprandeal blood glucose levels should return to fasting levels within two hours after eating.
Periods of hypoglycemia can cause similar symptoms.  
HbA1C is an average.  So if you have extreme highs and then extreme lows, the average will reflect something in between, aka "normal".  
Get a cheapo glucose meter and check your level before eating (fasting level) and 2 hours after eating.  You should be back at your fasting level two hours after eating.  Check during hypoglycemic periods to see how low it is.  
Postural Orthostatic Tachycardia Syndrome (POTS) is associated with Thiamine deficiency.
Pregnancy can drain thiamine.  Children can become deficient if their mothers were deficient during pregnancy.  Celiac Disease is hereditary, so children should be checked for Celiac genes and symptoms.
 
More Thiamine is required to fight infections like Covid.  Doctors have found that treatment patients with Thiamine, Vitamin D, and Vitamin C have led to better outcomes and increased survival rates and is necessary for recuperation for "long haulers" still dealing with after Covid symptoms.
In Thiamine deficiency, the body stores carbohydrates as fat as a means to save thiamine.  Inability to lose or shift weight is a symptom of Thiamine deficiency.
Iron and B12 can be stored in the liver for several years.  Deficiency symptoms of B12 can occur before blood levels show there is an outright deficiency.  
B12 deficiency symptoms can overlap with Thiamine deficiency symptoms and deficiency symptoms of other B vitamins because the eight B vitamins work all together.  Our bodies cannot make these vitamins, so we must get them from our diet every day.  Except for B12, most B vitamins cannot be stored for longer than a month.  If we have malabsorption  problems as in Celiac Disease, we can suffer deficiency symptoms in as little as nine days.
Riboflavin deficiency can contribute to migraines.  Riboflavin B2 and B6 Pyridoxine, Folate B9 are necessary for correcting anemia.  Not just iron supplements.  
Again, Sailors' asthma, tachycardia, increased anxiety are all symptoms of Thiamine deficiency.
Doctors don't recognize thiamine deficiency outside of alcoholism.  Doctors think nutritional deficiencies don't occur outside of starving third world countries.  They are wrong.
Celiac Disease causes malabsorption which results in malnutrition and vitamin and mineral deficiencies.  Checking for nutritional deficiencies is part of proper follow up care for Celiac Disease.  Unfortunately, blood tests for vitamin deficiencies don't accurately reflect the level of vitamins in the tissues.  The body will starve its tissues to keep levels in the blood stabilized in order to supply important organs like the heart and brain in order to keep them functioning.  By the time a deficiency shows up in the blood, it's very seriously depleted.
Discuss with your doctor and nutritionist about the benefits of supplementing with B Complex vitamins, Vitamin C, Vitamin D, Vitamin A, magnesium and other minerals while you are healing.  
Keep in mind doctors are not trained to recognize vitamin deficiencies.  Doctors are trained to prescribe pharmaceuticals in their pharmaceutical company funded medical learning institutions. 
Thiamine deficiency symptoms can wax and wane according to how much you consume from your diet so symptoms can fluctuate or progressively get worse with time.  Because Thiamine deficiency symptoms can vary in presentation in each individual, doctors tend to chalk it up to "anxiety" (especially with female patients), and prescribe pharmaceuticals.  This will not help. Correcting vitamin deficiencies will help.  
I've lived through severe vitamin deficiencies because my doctors did not recognize deficiency symptoms outside of alcoholism.  When I swore I wasn't drinking, they wrote me off as a hypochondriac.  I suffered for years unnecessarily.  

Nope, I think you got the science right. Must be something else. Give it more time. It commonly takes around two years for thorough healing of the villi after going gluten free in the mature adult population. Less time for children and young folks probably. Ferritin is about iron storage so it may take awhile for the stores to be built back up as opposed to hemoglobin which which is about what iron is available for oxygen transport "now" in the cells. Ferritin is about reserves.

My first two nights I had VIVID dreams of donuts. Until this phase passes eat whatever helps, No wheat, barley or rye, though. It is temporary and once you've kicked that little gluten devil off your shoulder your taste buds will find wondrous new things. 
Here are my hints; take large doses of vitamin D and Thiamine . Raising your vitamin D plasma level to 80 ng/ml may regulate your out of control autoimmune system. 
Make sure you are eating enough potassium and choline. There is worldwide concern about these two, There are no reliable tests.
"A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;"   https://www.healio.com/news/endocrinology/20120325/surge-of-information-on-benefits-of-vitamin-d-but-no-interventional-trial-data-exist-yet-to-ensure-s
Check out this list and compare, You are normal It is not nerves or hypochondria. Both Celiac Disease and NCGS respond to gluten free diet and increasing vitamin and minerals. Assume the worst, that it is still undiagnosed celiac disease.  Some people take 20 years before testing positive. 1% are diagnosed celiac disease, 10% are diagnosed NCGS. Welcome to the Twilight Zone.
What Are the Symptoms of Celiac Disease?
Common Nutrient Deficiencies in People with Newly Diagnosed/Untreated Celiac Disease
My diet: lean meat, cottage cheese, eggs, ripe bananas, vegatables, oranges, leafy greens. Avoid reduced fat products. Fill up.

This article may be helpful...
Hiding in Plain Sight
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/
 

Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?

Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing.
There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US time.
It does take time for recovery to occur on a strict gluten free diet. I noticed gradual improvement after about a week.

Yes, it is unfortunate that more blood tests weren't ordered for celiac disease. Not everyone who has celiac disease will show elevated tTG-IGA. Some immune systems respond atypically and as Russ314 said, low total IGA can skew the tTG-IGA downward. There is also the option of purchasing a home celiac test kit from a companies like imaware. But please understand that you would need to go off your gluten-free diet for a couple of months for the blood tests to be valid.
It does sound like you might be having gluten withdrawal. If you don't have celiac disease you could have NCGS (Non Celiac Gluten Sensitivity) for which there is no test.