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Hi all, Such valuable insights shared here - I am so grateful to be able to read along! Thank you all for sharing your wisdom.  I (37yo female) have recently had an endoscopy to screen for celiac given a strong family history and extremely low Ferritin for the past 7 years (not responsive to oral supplements). I am awaiting celiac blood panel results (completed post-endoscopy to provide another piece of the puzzle, I think was just an accidental oversight not doing earlier).  The endoscopy results are as follows: Gastroscopy:  Stomach: Mild gastritis and one 4mm benign appearing inflammatory polyp in the body.  Duodenum: Largely normal but few shallow erosions seen in the duodenal bulb. Microscopy:  1. Sections show specialised and non-specialised gastric mucosa with increased numbers of chronic inflammatory cells within the lamina propria including occasional clusters of plasma cells amounting to mild chronic inflammation. No active inflammation, intestinal metaplasia, dysplasia or malignancy is seen. Immunostains for Helicobacter organisms are negative. 2. Sections show small bowel mucosa with normal villous architecture. A mild non-specific intra-epithelial lymphocytosis is noted at the villous tips of uncertain clinical significance. The lamina propria contains a normal population of chronic inflammatory cells. No granulomas or parasites are seen. There is no dysplasia or malignancy. Conclusion 1. Gastric: Mild chronic inflammation 2. Duodemum: Mild non-specific intraepithelial lymphocytosis with preserved villous architecture.  The GI specialist, assuming blood tests come back normal, feels it is unlikely that it is celiac given the normal villous architecture. Suggested continuing on as usual and monitoring for symptoms etc, screening with blood test if required in the future.  Worth a second opinion or does this seem accurate? Anything else I should be considering? I feel a little lost as to how to best proceed! Thanks again.  

@TerryinCO, Are you taking a B Complex in addition to your B12?  B 12 needs the other B vitamins to function correctly.  Celiac disease and the damage to the intestines makes absorbing vitamins and minerals difficult.  Talk to your doctor and nutritionist about supplementing while you're healing.   Are you on any medication for your Gerd?  Here is often caused by too little production of digestive juices.  Supplementing with a B Complex will help.  

I definitely try to get those in my diet.  There is most likely a genetic component to the issues.  Thank you so much for the advice!!

Bless your heart!  That does make for a bumpy journey!  The Takeda ALINAMIN EX Plus really works well for pain relief.  I was surprised at how well it works.  I can't recommend it enough.  I can't tolerate aspirin nor nsaids.   Are you getting enough Omega Threes in your diet?  Healthy fats like olive oil help keep our discs and joints healthy and fluid. 

Thank you!  I will have to look into that.  I have Anklosing Spondylitis, bulging and dehydrated discs so pain is a big part of my life. 

Welcome to the forum, @trsprecker, I needed daily pain relief for three crushed vertebrae and found out that Thiamine, Pyridoxine, and Cobalamin (Vitamins B 1, B 6, and B12) have an analgesic effect.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/   This is the one I order through that big online store... It's made in Japan.  I've been taking it for a couple of years now without problems.   GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets I don't do corn, nuts nor artificial sweeteners, either!    Keep us posted on your progress!

I am celiac with corn and tree nut allergies.  I am finding it difficult to find OTC pain reliever that are safe for me.  Any suggestions?  I also do not tolerate any artificial sweeteners including stevia and agave.   Thanks! 

There are other possible causes or damaged small bowel villi besides celiac disease. Google this: Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies There is also something known as seronegative celiac disease: https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/

Quaker corn grits are not certified gluten-free! These may, in fact, be contaminated by cross-contact in the manufacturing process. I have been following a strict gluten-free diet for about 3 years, with varying results depending on cross-contact issues. My celiac testing was inconclusive - and I wasn't willing to go back on gluten long enough for a full celiac diagnosis. I get pretty severe symptoms just a few hours after ANY gluten ingestion, no matter how small, so gastrointestinal doc recommends continuing to follow a gluten-free diet. So whether I have celiac disease (I do have one celiac gene) or non-celiac gluten sensitivity, treatment is the same. I have enjoyed corn grits on occasion, but started seeing a pattern of gluten intake symptoms after large family breakfasts. This last time, I researched everything I might have ingested. My family is pretty good about cross-contact, too. When I got to the Quaker corn grits, I found they are not certified gluten-free, and the labeling does not say gluten free anywhere - although the only ingredients are corn grits, salt and some vitamins and minerals. The research I did confirms that while Quaker grits do not "contain" gluten ingredients, they may indeed be contaminated by cross-contact with glutens. I threw out all the grits (and corn meal) I had in the pantry, and bought some certified as gluten-free. Hopefully, next family breakfast will be better! 😋

Had my endoscopy yesterday I was told it would be about 6 weeks for the results..  Also found a small H Hernia  only small they won’t be doing anything about that about that.

This is going to be a long post...   Thank you for your time/expertise reviewing this. TTG (Anti-Tissue Transglutaminase) IgA Quantitative Normal range: below <4.0 U/mL Value   <4.0 A negative result indicates that celiac disease is unlikely. If suspicion for celiac disease is strong then supplemental testing may be warranted. Concentration Interpretation: <4.0 U/mL: Negative 4.0-10.0 U/mL: Weak Positive >10.0 U/mL: Positive Endomysial IgA Titer Normal value: <1:10 Value  <1:10 INTERPRETIVE INFORMATION: Endomysial Antibody, IgA Titer The endomysial antigen has been identified as the protein cross-linking enzyme known as tissue transglutaminase. Performed By: ARUP Laboratories 500 Chipeta Way Salt Lake City, UT 84108 Laboratory Director: Jonathan R. Genzen, MD, PhD CLIA Number: 46D0523979 Tissue Transglutaminase IgG Antibody Normal range: 0.00 - 4.99 FLU Value  <0.82 INTERPRETIVE INFORMATION: Tissue Transglutaminase Ab, IgG In individuals with low or deficient IgA, testing for tissue transglutaminase (tTG) and deamidated Gliadin (DGP) antibodies of the IgG isotype is performed. Positive tTG and/or DGP IgG antibody results indicate celiac disease; however, small intestinal biopsy is required to establish a diagnosis due to the lower accuracy of these markers, especially in patients without IgA deficiency. Performed By: ARUP Laboratories 500 Chipeta Way Salt Lake City, UT 84108 Laboratory Director: Jonathan R. Genzen, MD, PhD CLIA Number: 46D0523979

Thanks for the additional info, @TerryinCO. Can you give the reference ranges for the celiac antibody tests. The scores you posted are not of much value without reference range numbers since there are not industry standards for these tests as far as the the scales they use. What they are testing for is the same but how they concoct the tests is a little different from lab to lab. You will need to repost the original numbers as well as the reference ranges in a new post as you will not be able to edit the original post. Also, unfortunately, it doesn't seem your doctor ordered a "total IGA" test to determine of you are IGA deficient. If there is IGA deficiency, test scores for individual IGA celiac antibody tests will be artificially low. You mention that there are genetic tendencies on your mother's side for thyroid problems. Perhaps there is also an inherited tendency for celiac disease on that side as well. It's only in the last couple of decades has the medical community begun to understand that celiac disease has long fingers that extend far beyond gut symptoms.

Thanks for the replies, Trents and Knitty Kitty.   The endoscopy was a check on the Barret's esphagus status (every2-3 years).  So she wasn't really looking for Celiac conditions.  I was not on gluten free diet for the blood tests so no masking of results. The blood tests ordered afterward were (and results);  TTG (Anti-Tissue Transglutaminase) IgA Quantitative -  <4.0 (this is a 'weak positive' I beleive) ;  ENDOMYSIAL ANTIBODIES IGA  <1.10 ;  TISSUE TRANSGLUTAMINASE IGG AB <.82 ; and a CMP. I have been taking a B12 sublingual vitamin. I've been treated for hypothyroidism and GERDs for 20+ years.  Thyroid problems are genetic on my mother's side. With both your experience, I'd appreciate your input.  Thank you. Terry

Welcome to the forum, @TerryinCO, Have you been checked for nutritional deficiencies?  Damage to the intestines like your doctor found affects the absorption of essential nutrients.  Supplementing with B Complex, Vitamin D, and minerals like magnesium help ensure you are absorbing vitamins your body needs to heal.  Weight loss is often seen in the malnutrition that accompanies Celiac Disease.  Weight loss, Barret's esophagus, and hypothyroidism are related to Thiamine Vitamin B1 insufficiency.  Talk to your doctor and nutritionist about supplementing with Thiamine in the form Benfotiamine and other vitamins and minerals. Best wishes for your new journey with Celiac.  Keep us posted on your progress.

Pancreatic elastase is a digestive enzyme that requires Thiamine Vitamin B 1 to be produced.  Thiamine is needed to make insulin, too.  Thiamine, Niacin B 3, and Pyridoxine B6 are needed to make digestive enzymes and turn carbohydrates, fats and proteins into energy for the body, and for repair and healing of the body.  The Gluten free diet can be low in the eight essential B vitamins.  Gluten free processed foods are not enriched with vitamins and minerals like their gluten containing counterparts.  Supplementing with the water soluble B vitamins can ensure you're absorbing sufficient amounts of B vitamins to keep the body healthy.  Benfotiamine is a form of thiamin that helps heal the digestive tract.  Benfotiamine and Vitamin D help to reduce inflammation and calm immune responses, so if you are accidentally exposed, your autoimmune response might not be so bad. Supplementing with the B Complex vitamins is beneficial while healing.  Have you talked to a nutritionist?

Welcome to the forum, @TerryinCO! Do you know what blood tests were ordered? Was it for like you would have done for an annual physical (CBC/CMP) or celiac disease specific antibody tests? I find it interesting that your GI doc did the endoscopy and biopsy before he/she ordered blood tests to check for celiac disease, assuming the blood tests ordered were indeed specific for celiac disease. Normally, the sequence is the other way around. Was the GI doc doing the endoscopy for some other reason in the first place? The endoscopy/biopsy is considered the gold standard for celiac diagnosis so I also find it interesting that the doc reflexively felt a need to order blood work as well.  Just a heads up in case the bloodwork ordered was not specific for celiac antibodies: Going on a gluten-free diet before the blood draw for celiac antibody testing is done will likely invalidate the testing. You probably know this already but hypothyroidism (Hashimoto's disease) is common in the celiac population and there is a statistical correlation. And then there is the weight loss. And I assume you have suffered with GERD for a long time and that is what led to the Barret's. All symptoms of celiac disease.

...so lotsa questions and unknowns for me.  Gastro Doc did an endoscopy and found villi damaged so Celiac is suspect/known.  Subsequent blood work done and am awaiting evaluation from  NP or Doc. I've started gluten free diet and that's going well.  I don't have any real symptoms but have lost ~ 10# over last year or so....180 down to 170 ( I'm about 6'0 and always been on the scrawny side).  I'm 76 and up to now have not  had Celiac/gluten issues, but do take hypothyroid meds, and diagnosed/treated for Barret's Esophigus. I'm exploring the site here - looks like a lot of info available.  Talk with you later. Make yourself a great day! Terry    

@EricaFilpi, please tell us more about your recovery...did you need to take iron infusions or supplements? What other supplements are you taking? I'll assume you've been gluten-free since August.

We have been tested and tested negative. But we have not done the gene testing. 

So true, @trents, I was a skeptic myself!  

Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology of these situations is that family and friends try to make you as the celiac feel that you have a mental problem rather than a medical one. The fact is, they are the ones with the mental problem (ignorance and arrogance). It helps to avoid the brow beatdown to reframe it in that sense. But at the same time you must avoid the temptation to develop bitterness toward them which will destroy relationships. Rise above that and keep this one issue in its place so that it doesn't commandeer the whole of the relationships involved. As I mentioned above, I'm sure we can all remember times when we misjudged others because we were ignorant of the facts. One thing that sometimes happens in the celiac social experience is when some of those who were skeptical and critical of a celiac friend or family member find out they themselves have celiac disease. Boy, how that can change their attitude! And keep in mind, some studies have shown that almost 50% of the first degree relatives of those with celiac disease will themselves develop celiac disease. So, @sillyyak52, you may have the last laugh!

Hey SicilyGirl, I feel your pain, I am 51 and was diagnosed in August with Celiac and actually had to have iron transfusions because my iron was so low. I never had energy, going to one store wiped me out, it was horrible. Then the weirdest thing happened two weeks ago, I realized I had energy when I was talking on a phone and moving heavy Christmas boxes around like they were nothing, and then I ran off to make dinner. Talk to your doctor about your concerns and give yourself some grace. 

@sillyyak52, If it makes you feel any better, I have a sibling who thinks the dinner table (at fine dining restaurants, and less formal pub grub settings etc.) is a personal buffet table and dips into the food of whoever is sitting beside or opposite to them just to get a taste (no plate is safe!) ... never asks for permission ... and has no consideration of gluten cross contamination even though I've explained it diplomatically with articles, pictures of dermatitis herpetiformis (which I've had for years) like @knitty kitty and I both suggest you do. I avoid that sibling at restaurants now and sit at the opposite end of the table out of arms reach! I've had similar treatment at a recent siblings 60th BBQ with family and friends (brought my own food and burger), where I was told (in a very rude manner) "tough luck, there's nowhere safe ... just cook your burger on the BBQ" which was cross contaminated ... I stood my ground and asked for a clean frying pan to cook my burger safely and separately. 

knitty kitty makes a good point. Avocados are high in histamines. So are bananas. Both also trigger histamine production in the body when consumed so there's a double whammy with those two foods for those struggling with histamine intolerance/MCAS

@Sharke, The updated guidelines for a gluten challenge are to eat ten grams of gluten per day for two weeks minimum.  Lesser amounts of gluten (3 grams) don't provoke an immune response strong enough that the antibodies leave the gastrointestinal tract and get into the blood where they can be measured in tTg blood tests.   Have no doubt that the antibodies made in the small intestine are doing damage there, even if you don't suffer severe symptoms, yet. Did you react to barley prior to going gluten free? Have you been checked for chronic autoimmune gastritis which is another autoimmune disease that sometimes occurs with Celiac Disease? Have you been checked for nutritional deficiencies?  Thiamine deficiency (Gastrointestinal Beriberi) can cause constipation and/or diarrhea, abdominal pain, and weight loss.   Thiamine Deficiency Disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/  

@sillyyak52, Count another one in the same boat!  My family has always been in denial.  They said my tummy aches were a ploy to miss school.  My parents passed from health problems associated with uncontrolled Celiac Disease (Abdominal Aortic Aneurysm and Glioblastoma brain tumor).  My sister still has her head buried in the sand.   I agree with @Rogol72, try the consequences of untreated celiac disease shock treatment.  Sometimes people are just scared of having to change their comfortable lifestyle.

I have never been tested for tTg 6 antibodies but I will certainly do that next time I'm at the doc's.  Maybe there's a home test kit for that?  I drink lactose free milk and seem to be ok so I'm probably not a casein case but...who knows?!

I take Life Extension brand Mega Benfotiamine, (250 mg with each of two meals) and Maxlife Natural TTFD-B1 Max Thiamine (100 mg).   I try to take my Benfotiamine and TTFD before four pm, otherwise I have so much energy, it can be hard to fall asleep.    

Some people react to the Casein in dairy the same as to gluten, like me.  I avoid dairy avidly because I get ataxia so bad. Some Celiac people produce tTg 6 antibodies in response to gluten or casein.  tTg 2 antibodies are what blood tests for Celiac measure.  tTg 6 antibodies are also found in Alzheimer's and Parkinson's diseases, contributing to ataxia.  Have you been checked for tTg 6 antibodies?   P. S.  Can you share your B vitamin test results?

I agree that you were not eating sufficient gluten prior to your endoscopy.   

What supplement do you use and how much?

Hi Knitty Kitty,  Thanks for sending all of these articles.  Some of them are too complex for me to parse.  That said, I had extensive blood tests done when the ataxia started.  I was a little low on Vit. D.  My doc thought I might be low on Vit. K.  But no.  K levels were completely normal as were all of my B Vits. levels.  I take a D supplement but even with that, if I have lactose, I start to feel my head get inflamed.  It is what it is.  

@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/

Hi, how are you doing? Have you been checked for nutritional deficiencies?  The pancreas uses lots of Thiamine to make digestive enzymes and insulin.  Deficiencies in Thiamine, or Vitamin D can affect the balance. P. S. Interesting articles: Proinflammatory cytokines inhibit thiamin uptake by human and mouse pancreatic acinar cells: involvement of transcriptional mechanism(s) https://pmc.ncbi.nlm.nih.gov/articles/PMC8112188/ Histamine Intolerance Originates in the Gut https://pmc.ncbi.nlm.nih.gov/articles/PMC8069563/ Non-responsive celiac disease may coincide with additional food intolerance/malabsorption, including histamine intolerance https://pubmed.ncbi.nlm.nih.gov/33268003/ Histamine Intolerance—The More We Know the Less We Know. A Review https://pmc.ncbi.nlm.nih.gov/articles/PMC8308327/

Hi, how are you doing?  Have you tried a low histamine diet?  I was wondering because you said you had refractory celiac.  Steroids will lower histamine, but I wondered if you were following a low histamine diet in addition.  Have you been checked for nutritional deficiencies?  

Low carb high fat , this diet is good fo diabetes patients and those who want to get down in weight and have their bloodsugar on good levels. They don't eat carbs they eat high fat products as high fat is not dangerous. It's a myth. Your get more gallstones without fat. When i start eat more fat my gallstones have went off. They not eat grains and sugar. They eat whole fat products and feel better then ever. When i did not eat so much fat before i had problems with my gallbladder and stones. When i started LCHF my doctor said all of my stones have dissapear from gallbladder from last screening of my bladder. I feel better and not tired as i had eat a lot of carbs then my bloodsugar should go up and down like a carousel. Carbs will turn my body to sugar and store as fat. Many doctors now have changed their minds that high fat was so dangerous. But now it have better respond to protect our body. I eat it and i have not feel so good ever. Its a lifestyle for me. I had diabetes 2 before now i don't need to take my insulin anymore.

@SaiP, why are you using white rice in instead of whole grain rice or even brown rice?

Low carb high fat see www.dietdoctor.com

Have you and you and the children's father been tested?

I lean towards very probably celiac disease due to the two positive tTg-IgA blood tests. Although there are other things that might cause this test to be elevated in certain individuals, the most likely cause by far would be gluten sensitivity.  This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     

What is the LCHF diet...low carb high fiber?

@SaiP, I noticed that you are eating foods that are high in histamine.  Bananas, avocados, spinach, gluten, and tuna are high histamine foods or are histamine liberators.  Histamine is released by mast cells in the body as part of the autoimmune reaction to gluten.  High histamine foods add to that histamine burden, making clearing histamine difficult.    Histamine is a helpful neurotransmitter, causing alertness.  We wake after sleep because our body produces histamine.  BUT, excess histamine causes insomnia.   We need vitamins and minerals, like Thiamine, Pyridoxine, Cobalamine, Vitamin C, and magnessium, to help our body break down and clear out histamine.   We need Thiamine and the other B vitamins to turn carbohydrates, like white rice, protein and fats into energy and fuel for the body.  The more carbohydrates you eat, the more thiamine is needed above normal.  More thiamine is needed when physically sick, or emotionally stressed.  Losing weight until skin and bones is a symptom of Thiamine deficiency. White rice is stripped of nutrients like Thiamine, when the germ is removed to make it white.  Vitamins added to enriched rice can be lost if the rice is washed.  If you are increasing your rice consumption, you need to increase your thiamine.  The form Benfotiamine has been shown to promote intestinal healing. Healthy fats like olive oil should be included in the diet.  Our body likes to use healthy fats as fuel.   Do look into a low histamine gluten free diet.

The first lab was different because Allina switched which lab they work with in between March and October. But October and January were the same lab. All through Allina but two separate labs.  

Since she is asymptomatic and her first biopsy was negative I would not assume she has developed celiac disease. If her upcoming biopsy shows evidence of mucosal damage you have the firm evidence you need to trigger the gluten-free protocol at the preschool. There are other causes for mildly elevated tTG-IGA levels besides celiac disease. Studies are all over the map with this statistic but there is somewhere between a 10% and an almost 50% chance that your daughter will develop celiac disease since she has a first degree relative who is a celiac (her sister). The important thing in this scenario is to continue to monitor the situation via testing and symptoms. You are already doing this so kudos to you and your doctors. But one question I have is, are the blood samples being tested by the same lab in each case? Different labs build these tests a little differently and there is no industry standard. So, to compare her tTg-IGA test scores from one time to the other is only useful if the analysis is being handled by the same lab.

My daughter was tested at her annual appointment when she turned 4 because her brother has celiac's. She has no symptoms. She eats a lot of gluten.  Blood work round #1 March 2024:  -          Endomysial IgA Ab: Negative  (Range: Negative) -          Gliadin IgA: <10.0 U/ml  (Range: <20.0 Negative) -          IGA: 93.43 mg/dL  (Range: 27.00 - 195.00) -          TISSUE TRANSGLUTAMINASE IGA: 9.1 U/ml  (Range: <4.0) *** this was high. the range changes for the next one, but it was noted that it was about double the range.  We went for an endoscopy in May 2024 and it was negative.  Blood work round #2 October 2024: -          ENDOMYSIAL ANTIBODY TITER: 1:5 titer  (Range: <1:5) **flagged as high -          ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER: POSITIVE  (Range: NEGATIVE) **flagged because its not negative -          IMMUNOGLOBULIN A  TISSUE TRANSGLUTAMINASE AB, IGA:  28.8U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.) **flagged high but the ratio/range was different and about double. Note says: Serological evidence for celiac disease is present. Blood work round #3 January 2025: -          TTG IGA: 28.1U/mL  (Range: 22 – 140.  <15.0  =Antibody not detected. >or= 15.0 =Antibody detected.) Now we are scheduling another endoscopy. My main concern right now is if the endoscopy is negative again…where does that leave us??? Public Schools and daycare will not feel her gluten free if its not an official diagnosis.

Hi im from northern europe are blood type 0+ have celiac with code K900 on the paper from doctor, have low vitamin D and b12 and folate, zinc, manganese and high copper it say in test. The best food i have eaten for now is LCHF, i tried paleo but i was missing the dairy. And i love the cream in sauces. LCHF is good choice there is no grains in the dishes. It's completly gluten free lifestyle i say. Because i feel good to eat it.

Hello,   I contacted the makers of Alpine Original Spiced Cider Drink Mix and they sent me this email.....   Subject: [EXTERNAL] Fw: Ref. ID:1335211 Alpine Original Spiced Cider Drink Mix.               On Friday, December 6, 2024, 1:04 PM, Consumer <baking@continentalmills.com> wrote: December 06, 2024   Dear Janie, Thank you for taking the time to contact us regarding our Alpine Original Spiced Cider Drink Mix. We appreciate your interest and are happy to provide you with additional information. This product does not contain gluten. However, it is not manufactured in a gluten free facility. If I can be of further help, please contact me at 1 (800) 457-7744, weekdays 7:00 a.m. to 4:00 p.m. (PT), or visit www.alpinecider.com and select "Contact Us." Sincerely, Kristin Kristin Consumer Relations Specialist Ref # 1335211   I hope this helps everyone.  I am currently looking for a spiced hot apple cider drink and have yet to find one that is not made in a plant that manufactures other gluten products.  It's so frustrating. 

@Rogol72, dermatitis herpetiformis occurs in a minority of celiac patients and if the OP hasn't developed it yet I doubt it will show up in the future. I think it unwise to use a scare tactic that probably won't materialize in the OP's experience. It has a good chance of backfiring and having the opposite effect.

Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.

Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg

Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     

The link is in my signature block, but is:  

Hi Scott, You mentioned in your response that you have been taking supplements long term.  What brand(s) do you take?  I ask because I've had a very difficult time finding truly gluten free supplements that have not made me sick over time from allowable trace amounts of gluten within the FDA's acceptable limits. Thank you, Peg

Keep in mind that Dapsone can have some serious side effects, so be sure to look into those before you start using it. More about that is here: https://www.mayoclinic.org/drugs-supplements/dapsone-oral-route/description/drg-20063327

I suggest you look at your calorie intake. If you're not eating enough calories, your body will signal you to wake up and forage for more food. You need to be eating more calories than a healthy person of normal weight in order to gain weight. Also, your diet is extremely low in fat unless you are eating chicken thighs with the skin on, which I would recommend. Also be sure to add butter (real butter) to your vegetables. You can measure and record everything you eat, then look up and calculate what your protein/carb/fat intake is. Or just eat more chicken rather than filling up on vegetables and fruit.