Beverage

Welcome to the forum, Kirbyqueen!
Try cutting down on your iodine intake. Some celiacs who suffer from the DH rash report that this helps a great deal.
The one medication that seems to really work for the DH rash is dapsone. 

I take Thiamine, Pyridoxine, and Cobalamine for pain relief.  I have back pain due to broken vertebrae and this combination of vitamins relieves the pain without side effects of pharmaceuticals.
Thiamine, Pyridoxine and Cobalamin are vitamins that are water soluble and safe.
References:
Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review
https://pubmed.ncbi.nlm.nih.gov/35156556/
Nutritional and Metabolic Imbalance in Keratoconus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8876314/
Corneal Crosslinking With Riboflavin and UVA Light in Progressive Keratoconus: Fifteen-Year Results
https://pubmed.ncbi.nlm.nih.gov/36736417/
 

Since Jan of this year my health went in a downward spiral.  My whole life I have had one issue after another.  I am somewhat familiar with autoimmune diseases because my youngest daughter has been sick her entire life.  She has been tested for a million things.  Because her father’s side has autoimmune issues. No doctor never diagnosed her.  It would have saved us 30 years of hell.  That being said.  I believe this is what we all have.  My oldest daughter diagnosed bi-polar, then Kerataconus.  I am in a total brain fog now.  With memory failure and lost 20 pounds in one week.  Leg cramps(killer) even my thighs.  I have had just about every symptom.  That being said,  I took a flexeral today and feel better.  Started gluten free diet then I had to check for hidden gluten.  I don’t like taking any pharmaceutical drugs.  I am looking for something to relieve the muscle cramps that isn’t a drug that really works.

Welcome.  I ate at restaurants and people's homes for many years after I was diagnosed, and I felt bad a lot.  For years.  I considered it cheating, but it was not worth it.  Restaurants and friends may mean well, but they're correct when they tell you that they can't guarantee anything.  I had a girlfriend who would get angry when I looked at ingredients lists on food she was preparing and she'd say "Do you think I'm trying to poison you?"  My own mother would say "Oh I just put in a little bit of flour, it's not much."  But it has to be ZERO.  Don't play around!  If you had a friend on crutches who couldn't climb stairs to get in to a restaurant, would you say, "C'mon, it's just a few stairs, it's no big deal, suck it up!"?  No.  A true friend would not say that.  Also, once you make it ZERO, it's a relief, because you don't have to play around or fret about socializing, or wonder if you can get away with just feeling a little bad.  That part is over.  

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.
10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri. Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom? Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS." Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.). Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine. Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

Yeah I feel a lot better already just talking on here! Yeah I completely agree! Well I’ll keep you posted if I get anymore answers from my GP in terms of next steps. 
 
Coeliac disease really is an evil little body destroyer that needs to be stopped (other than just stopping eating gluten) by some remedy. We’d all be rich if we had the answer!!
keep posted with how you get on with your ct results!

Sounds like you are in the UK. With blood numbers that high, I thought docs in UK would give an official diagnosis without the biopsy. You should ask about that, so you can get support faster.  I'd try to find and print out anything that supports that in your country, get another appointment and take all of it with you.
Even in the US now, some docs are doing this, my 19 year old step granddaughter got an official diagnosis here in US with just blood results a few months ago.

My 16 year old daughter has Celiac and had an incredible experience on our family safari.  I was nervous about traveling so far from our gluten free staples.  I researched this trip over a few years and a few tour companies. We finally felt comfortable.  We were amazed that our tour guide and the lodges he picked were so knowledgeable.  They knew proper food handling and often would substitute baked goods using cassava flour and others.  We were amazed at the options she had and the care and concern all showed.  
Chris Samwel of I Dream of Africa was recommended by a dear friend who had taken her family (3 sons) on safari July 2023. We went to Tarangire, Ngorongoro, Lake Masek and Central Serengeti. Christopher planned the perfect itinerary -we truly wouldn't have changed any of our lodging choices and we saw such diversity in topography and animals. We loved the majestic 2700 yr old Baobab trees speckling the Tarangire, the lush Jurassic Park' like feel of the Ngorongoro, the giraffe sculpted acacia trees in Lake Masek, and the Great Plains of the Serengeti. We saw lions, huge herds of elephants (200+ elephants), the migrating herds of wildebeest and zebra, giraffe, hippos, hyena and so so much more! Chris worked with each location to be sure my daughter had gluten free celiac safe options. We can not say enough good things about Chris Samwel and I Dream of Africa!  

@cristiana
hi! 
the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 

Clean well as others have said, use a toothbrush or brush of some kind to clean out all corners, edges, valleys, etc.  After all that cleaning, I would also make a batch of gluten free waffle mix and make a bunch of waffles and throw them out, don't eat those.  Perhaps that will help pick up any remaining stuck on or hard to get stuff.  I did this with one pan I didn't want to toss and I didn't have any issues that I know of. 

I reacted to Aussie Bites. I have also reacted to Bob's gluten free oats and granola. The only oats I can tolerate are Purity Protocol oats. But for now, stay away from all oats until you feel better, and for awhile after. Then try Purity Protocol oats to see if you can eat those or not. 
https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/
 
 

I get really awful muscle spasms when my magnesium runs low. I take Trace Mineral Drops. I get it from Amazon for a few days and they go away. You can also buy them at Health, Food stores like Whole Foods sprouts.  Magnesium pills don’t work like the liquid form which works fairly quickly. It doesn’t take very long for them to come back if I forget to take it or don’t take it.
Our food lacks magnesium and has for years.  Magnesium is essential for the electrical functioning of our body also building bones. The government has known that our soil has had next to no magnesium in it since 1936. No magnesium in the soil means no magnesium in our food. So you get muscle cramps - that’s the most obvious symptoms, heart palpitations. I had those too, long gone since I started taking magnesium. Muscle cramps are gone again. Those will return when I don’t take the Trace Mineral Drops. Also contains chloride, sodium, potassium, sulfate, lithium and boron and is the easiest form -liquid - for your body to absorb the minerals. Worst side effect is that you will get diarrhea if you take too much so you have to find a happy balance, but worth it to get rid of the horrible cramps and the muscle spasms. 

Welcome to the forum, @Soleihey!
Undoubtedly, you are experiencing vitamin and mineral deficiencies. Superficial serological vitamin and mineral deficiency testing often does not tell the whole story as it only measures what's floating around in the blood, not what is actually getting into the tissues and being used by them. There are more in depth tests that can be helpful in this regard but symptoms are probably more of a barometer and much cheaper.
Realize that by the time symptoms develop, you have probably had celiac disease for years previous to that. Vitamin and mineral deficiency symptoms are often slow to develop. It often takes around 10 years for adults to get a proper celiac diagnosis. 
My suggestion would be for you to begin a regimen of high potency B-complex, 5-10k IU of D3 daily, zinc, 400 mg of magnesium glycinate daily. Costco's Kirkland Signature and Nature Made product lines are excellent choices if you live near a Costco. Make sure all supplements are gluten free. Choline bitartrate is another smart supplement add in.

I just wanted to add that another way of saying much of what I said in my previous post is that it is important to take control of the situation rather than letting it control you. Let go of the elements you can't control but cease control of the ones you can. Don't fear what others will think about you. You need to do what you need to do to protect your daughter while at the same time allowing her to have as normal a social life as possible. 

My results came back. Fortunately negative for hepatitis which is a good weight off my shoulder.
My liver tests are exactly the same apart from my Ast has gone down by 1 u/L is just within the reference limits this time around.
Which from my NHS Doctors perspective means no further action is necessary / no further investigation will take place.
The full list of bloods from this repeat test they took and there results are -
Hepatitis B surface Antigen - NEGATIVE
Hepatitis C antibody test - NEGATIVE
Result: Normal - No Further Action Required
Serum Total Protein level 74 g/L [60-80]
Serum albumin level 46 g/L [35-52]
Immunoglobulin G level 10.9 g/L [5.3 - 16.5]
Immunoglobulin A level 4.0G/L [0.7-4.0] 
Immunoglobulin M level 1.0 g/L [0.5-1.9]

Serum Alkaline Phosphatase level 76 u/L [40-150]
Serum alanine aminotransferase level 0 u/L [0-50] Above high reference limit
Serum total bilirubin level 12 umol/L [0 - 21.0]
Serum albumin level 46 g/L [35.0-52.0]
AST serum level 35 uL [0.0-35.0]
Result: Satisfactory - No Further Action Required
Clearly there is something else going on and I have decided to speak to my private Doctor through my work insurance scheme who is referring me to a gastroenterologist. This could take a while to kick into gear but I will update this thread in case someone else is in a similar situation to me once I have more information. 

 

Food, sauces, etc. can get really cooked onto the inside of grills and on grates, which have lots of places to hide.
On my gas grill, i scrubed inside with balled up aluminum foil, sponges, and stiff toothbrush to get off all black cooked on stuff. I might have used a small amount of EASY OFF oven cleaner (EASY OFF is the one recommended by the grilling gurus) in corners where gunk can accumulate. To replace the grates on it would have been pretty expensive, so I removed them from the grill and used oven cleaner on them, picking out any cooked on stuff at the places bars cross. I got down to shiny stainless, absolutely no black anywhere, like new.
On my vintage weber kettle I've had since I was 19, I used oven cleaner on the inside of the kettle to get all cooked on stuff off, had to repeat several times, went through 2 cans of oven cleaner. Since this one is not gas or electric, easy to hose everything off. I just got new grates for it since those are pretty inexpensive.
It's awesome to use these now, really clean.

I ignored my doc's instructions to not eat oats, I ate Bob's gluten-free oats and gluten-free granola. It took about a month, but I got horribly glutened. I tried other gluten-free oats and still got sick. I eliminated them for awhile, thinking I was one of those that reacted to oats. Then I tried "purity protocol" oats and no reactions anymore. Here's a list. Check it regularly as it can change. 
https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

Hello, @Hiawatha, 
Improving ones posture while eating can help us swallow less air while eating.  Sit up straight, both feet on the floor.  Sitting hunched over with a rounded back traps more air.  And chew your food well!  Thirty chews for each bite of food.  Our moms were right!
To help trapped gas after eating, try standing on tip toes and let your heels drop with a little thud.  It helps move gas bubbles up and out, like burping a baby.  
Leaning to the left side straightens out the esophagus, stomach and upper small intestine.  This allows trapped air to exit easily.  
Consider reducing the amount of carbohydrates in each meal.  Small Intestinal Bacterial Overgrowth can produce excessive gas as the bacteria digest excess carbohydrates.    
I chose a carbohydrate free diet for several weeks to starve out my SIBO.  If you change what you eat, the intestinal bacteria change.  
Digestive enzymes like DAO supplements may help you, too.  Diamine Oxidase (DAO) supplements provide digestive enzymes that help.  Some people find increasing the acidity of the stomach by taking a small drink of Apple Cider Vinegar in warm water helpful.  
I'm so glad to hear you're feeling a bit better!  I'm cheering you on!  

Blood tests are NOT accurate in measuring deficiencies.  
Blood is a transport system!  Blood levels of vitamins can reflect how much and which vitamins you absorbed from dinner yesterday.  Blood levels have little to do with the amount of vitamins inside cells of the body where vitamins are actually utilized for cellular and organ functions.  
The World Health Organization says that the best test for vitamin deficiencies is to take vitamins and look for improvement.
The study of vitamins, naturally occurring amines (so not able to be patented), was abandoned in favor of the study of pharmaceutical drugs created in laboratory from petrochemicals and able to be patented, and therefore earn money for the inventor.  
All these articles and more express the inaccuracy of blood testing of vitamins.  
B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/
....B Vitamins: Functions and Uses in Medicine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/
...The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/
Laboratory Evaluation for Vitamin B12 Deficiency: The Case for Cascade Testing
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573090/
Please reconsider trying supplementing.  The B vitamins are water soluble, if you don't need them you pee them out easily.  No harm, no foul.  If you do need them, you will see symptom improvement.
P. S. Please read my blog.  My mental health declined because my doctors did not recognize vitamin deficiencies.  

I wonder if your request actually went to the doctor or was just denied by other staff.  
Perhaps some references to scientific articles would help to make your point:
Gluten induced cognitive impairment (brain fog) in coeliac disease
Cognitive impairment in celiac disease…
Celiac Disease and Neurological Manifestations: From Gluten to Neuroinflammation

Brain fog in celiac disease is often linked to nutrient deficiencies. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.
 
 
 

Here is some more reading on brain fog and celiac disease in case you are interested:
https://www.celiac.com/search/?&q="brain fog"&type=cms_records2&quick=1&search_and_or=and&search_in=titles&sortby=relevancy 

@Hiawatha,
My family is the same way...😼
Not much information available about sugar and EOE may be because there's a simple solution that doesn't require pharmaceuticals.  

Other vitamins and minerals are needed to correct iron deficiency anemia in addition to iron.
Riboflavin B 2, Zinc, Thiamine B 1, Pyridoxine B 6, and Vitamin A in addition to Cobalamine B12 and Folate B9 are needed to grow new red blood cells.  
Consider supplementing with B Complex, Zinc and Vitamin A to correct iron deficiency anemia.  It worked for me.
References:
Riboflavin intake and status and relationship to anemia
(Riboflavin helps iron absorption)
https://pubmed.ncbi.nlm.nih.gov/36018769/
.....Effect of vitamin A supplementation on iron status in humans: A systematic review and meta-analysis
https://pubmed.ncbi.nlm.nih.gov/29336593/
.....Association of Zinc Deficiency with Iron Deficiency Anemia and its Symptoms: Results from a Case-control Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6402732/
....The Association Between Vitamin B1 Deficiency and Anemia Among Elderly Patients at a Rural Hospital in Japan: A Cross-Sectional Study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10652054/
....Activity studies of an iron-vitamin B6 preparation for euteral treatment of iron deficiency anemia
https://pubmed.ncbi.nlm.nih.gov/1213868/

Welcome to the forum, @Anne G!
Sorry to hear your daughter is having such a rough time. 
I have had very bad reactions to SSRIs.  They are known to cause gastrointestinal side effects.  
Side-effect profile of fluoxetine in comparison with other SSRIs, tricyclic and newer antidepressants: a meta-analysis of clinical trial data
https://pubmed.ncbi.nlm.nih.gov/15744630/
 
How long has your daughter been diagnosed and on a gluten free diet?  Is she taking any other medications?  
Since Celiac Disease causes malabsorption of essential nutrients, has your daughter been checked for nutritional deficiencies?
Damage to the small intestine (villus atrophy) results in malabsorption of essential vitamins and minerals.  B vitamins cannot be made by the human body.  We must get sufficient B vitamins from our diet every day because B vitamins cannot be stored.  Unfortunately, the gluten free diet can be low in essential nutrients, especially if gluten containing products (which are required by U.S. law to be enriched and fortified with vitamins and minerals) are replaced with gluten free facsimile foods (not required to be enriched and fortified at all).  
Taking B Complex supplements boosts the availability and absorption of these essential vitamins.  
Discuss the benefits of supplementing with your Nutritionist or dietician, as well as your doctor.  Unfortunately, many doctors are not as well educated about the importance of vitamins as we would wish.  As a microbiologist, I understood how important these essential vitamins are to cellular function and health.  
 
Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet
https://pubmed.ncbi.nlm.nih.gov/19154566/
...Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet
https://pubmed.ncbi.nlm.nih.gov/34445038/
And...Associations of dietary vitamin B1, vitamin B2, vitamin B6, and vitamin B12 with the risk of depression: a systematic review and meta-analysis
https://pubmed.ncbi.nlm.nih.gov/33912967/
... Dietary intake of B vitamins and their association with depression, anxiety, and stress symptoms: A cross-sectional, population-based survey
https://pubmed.ncbi.nlm.nih.gov/33848753/
 
Thiamine Vitamin B 1 has been shown to alleviate depression and promote intestinal healing.  
...Thiamine and benfotiamine: Focus on their therapeutic potential
https://pubmed.ncbi.nlm.nih.gov/38034619/
...Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/
And...Adjuvant thiamine improved standard treatment in patients with major depressive disorder: results from a randomized, double-blind, and placebo-controlled clinical trial
https://pubmed.ncbi.nlm.nih.gov/26984349/
And...Thiamine nutritional status and depressive symptoms are inversely associated among older Chinese adults
https://pubmed.ncbi.nlm.nih.gov/23173173/
Riboflavin Vitamin B 2 helps....
Dietary riboflavin intake in relation to psychological disorders in Iranian adults: an observational study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10060244/
 
Pyridoxine Vitamin B 6 helps...
Vitamin B6: A new approach to lowering anxiety, and depression?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9577631/
 
And Folate Vitamin B 9....
Folate and Its Significance in Depressive Disorders and Suicidality: A Comprehensive Narrative Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10490031/
 
And Vitamin B 12 Cobalamine....
Vitamin B12 Supplementation: Preventing Onset and Improving Prognosis of Depression
https://pubmed.ncbi.nlm.nih.gov/33251075/
And Niacin Vitamin B 3....
Dietary niacin intake in relation to depression among adults: a population-based study
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10506255/
....Diagnostic value of niacin skin blunting response in adolescent patients with depression
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634130/
....Comparative study of efficacy of l-5-hydroxytryptophan and fluoxetine in patients presenting with first depressive episode
https://pubmed.ncbi.nlm.nih.gov/23380314/
 
I found taking Tryptophan, a form of Niacin Vitamin B 3, more effective than any SSRI.  Tryptophan is used by our bodies to make more Serotonin. 
Serotonin is normally made in the intestines, but inflammation due to Celiac disease can reduce its production.  With less serotonin being made, depression results.  SSRIs prevent serotonin from being reabsorbed, so more serotonin is available. 
However, Tryptophan is used to easily make more Serotonin.  With more serotonin available, there's no need for a SSRI. 
Do NOT take Tryptophan while taking an SSRI, which can result in Serotonin Syndrome (too much serotonin that can result in physical and mental symptoms).  
Demystifying serotonin syndrome (or serotonin toxicity)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6184959/
My doctors had prescribed a plethora of pharmaceuticals which resulted in me developing Serotonin Syndrome.  Easily corrected by stopping the pharmaceuticals.  I just take Tryptophan since without problems.  
And Vitamin D helps, too...
Is Vitamin D Important in Anxiety or Depression? What Is the Truth?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9468237/
All of these vitamins help heal the digestive system and lower inflammation.  
I hope this helps!