Celiac Canada (CCA) is the science-based voice for people living gluten free in Canada. We are a registered charity. We provide evidence-based information, offer world-class education and invest in research to help find a cure or treatment for celiac disease and non-celiac gluten sensitivity. We have local chapters across Canada that also provide regional events and local peer support group sessions.
I’m in my 60’s. I’m not diagnosed even though I’ve been to many doctors with visible symptoms. My latest break out of torturous itchy blisters all over my arms, neck and chin was after taking iodine. The worst reaction ever, worse than those from wheat. I’ve been gluten free for years. My thyroid developed a bump. I looked on the net to find answers. It said most likely goiter starting. Haven’t been using iodized salt so that made sense. Started liquid iodine. The bump went down. Then I got the blisters. Not right away either, but when they hit, it was so bad. No help from doctors. I will ask about dapsone. We need iodine, so it’s like we are doomed to have one health issue or the other. Avoid iodine, get goiter. Take iodine, get blisters. Any research or answers??
Gluten (particularly gliadin, a gluten peptide) essentially acts as a neurotoxin. It's pure poison for the brain. I didn't have any intestinal problems at all, but I struggled with severe brain fog, memory issues, depression with anhedonia and lack of motivation, drowsiness, fatigue, and a nagging occipital pain that was resistant to all types of painkillers including opioids. I slept 14 hours a day and could barely get out of bed. I started experimenting on myself with different medications in desperate search of relief. Antidepressants like bupropion and amisulpride have given me some help with motivation by increasing dopamine and norepinephrine and I have been able to get rid of nape pain thanks to acetazolamide which lowers cerebrospinal fluid pressure. But no one was 100% effective, it was like taking a daily dose of poison with one hand while trying different antidotes with the other one without knowing which poison it was. I was on the verge of getting some irreversible MAOIs, the most powerful antidepressant medications ever and wanted also try high doses of IV steroids (dexamethasone) when the turning point was the appearance of persistent dyshidrotic eczema which made me suspect some type of food intolerance/allergy. I used a drastic method: fasting! Only water and electrolytes for 3 days. Eczema gone! But not only that! I felt less tired with less need for sleep and more energy! You wouldn't think so for someone who hasn't eaten for 3 days! It was clear that the poison was in the food and it didn't take long to figure out that it was gluten! Following a strict gluten free diet all symptoms improved day after day!
Severe iron deficiency *without* anemia was the red flag that led to discovering I have celiac disease. Made things difficult to find because my hemoglobin was always normal or even slightly elevated (maybe because I live at somewhat high altitude). Since my HEM was normal, docs never thought to look closer at my iron. It wasn’t until I ordered my own ferritin test and found it was severely low, and soon found via biopsy that was due to untreated celiac. Wish more PCPs were aware that one can have normal hemoglobin and still have severe iron deficiency - there’s a study from Japan showing people with normal HEM and yet zero detectable iron in bone marrow smear tests. This is an area where hematologists are aware of this but general physician education seems to be decades behind, and it cost me a lot of time and pain :(
Within the first 2 minutes... exactly why I'll always tune out when a dietitian starts talking. "Sponsored by a company who makes a bunch of gluten free GARBAGE". That sums up their college education too. Funded by Frankenfood companies. How are still puzzled why we're all still so metabolically sick?
Folic Acid should be replaced with Methylfolate since 40% or more of the population have the blood mutation known as MTHFR. This is NOT a good idea. Methyfolate is the best bioavailable source of folate. It doesn't do any good to offer Folic Acid with it can cause metabolic issues in those who can NOT metabolize synthetic supplements. Bioavailable Methylfolate is the best answer to this problem for everyone.
From a patient's perspective: It seems to me that there is something seriously lacking in the flowchart that could result in far more accurate results - patient experience. I suspect that part of the reason for that is the difficulty of ascribing a numerical value to it. I can understand why, when patients experience has been not that strong, physicians might not want to take it into account. But I think it is frankly absurd to discount patient experience entirely when it has been overwhelmingly strong. In my case I was very seriously ill - 132 pounds down from a normal lean body weight of 164 - 20% below normal weight and with multiple severe vitamin and mineral deficiency symptoms. I got an excellent nutritional reference and checked to see if vitamin deficiencies could be causing my problems. I was astonished to see that I had multiple nutritional deficiency symptoms including very severe B complex deficiencies. The book also noted celiac disease as a possible cause of nutritional deficiencies. I had already made a long list of symptoms which is what I used to match up against the list of vitamin deficiency symptoms. All my symptoms were characteristic of celiac disease. I had just about every symptom of celiac disease listed and in severe form. I attempted to schedule appointment explaining all the above and stressing that I needed an urgent appointment so I could go on a gluten-free diet as soon as possible. The earliest that I could get was over three months . I was so ill that I did not think that I would necessary live that long without going on a gluten-free diet, so I did. It was very clear from having read patient support groups that there were many hidden traps and processed foods. Since I was in such desperate condition, I decided to just eliminate all processed foods entirely as the only way to be sure of avoiding all gluten. Also worked out a program of vitamin supplementation taking care to keep levels of all fat-soluble vitamins within reason. I also worked out a healthy balanced diet with no grains whatsoever that all foods selected to be particularly high in vitamins and minerals. My urine remain clear like water, despite taking 100mg/day of b-complex. Since they are water-soluble and very safe I kept increasing the dose until it was enough to turn my urine yellow - which initially turned out to be 2000 mg/day. Within several days of reaching that point all of my B complex deficiencies were totally resolved. I regained 32 desperately needed pounds, all of it lean healthy tissue in only six weeks. By the time of my appointment, the doctor was highly skeptical of celiac disease and gave no weight whatsoever to the strength of my experience. (He also had apparently been brainwashed by pharmaceutical representatives so much that he could not imagine how taking vitamin supplements could be beneficial even for someone with severe vitamin deficiencies!) This appears to me to be a very serious lack in the evaluation of celiac disease. I can understand why physicians would be reluctant to ascribe much weight in cases where the correlation between the patient's symptoms and gluten in their diet was not all that strong. However it seems to me totally absurd to give patient experience no weight when the reaction to gluten-free diet has been that overwhelmingly strong! What disturbs me the most about your flowchart is that it seems to take no account whatsoever of patient experience. I would maintain that taking that adequately into account would make a test far more accurate. I can understand the concern for making a diagnosis imposing a lifelong dietary restriction in cases where it might be not required. However, IMHO, it is a serious lack to not counterbalance that concern against the severity of the patient's condition. My doctor was very dishonest when recommending a gluten challenge in order to get a biopsy (which, of course, would have been entirely unnecessary had I been able to get a prompt appointment!). He presented it as if taking a gluten challenge would ensure that the biopsy was accurate. I found out later that was totally untrue because the medical literature clearly stated that "no one knows how much gluten must be reintroduced into the diet nor for how long before a biopsy becomes accurate". Although I was rapidly becoming ill again, apparently my gluten challenge was not enough to get a positive result on the biopsy. After becoming healthier Than I had ever been before in my entire life, I was conned by a gross misrepresentation of the effectiveness of a gluten challenge into becoming sick again for no good reason. So my doctor recommended doing a longer challenge with larger amounts of gluten. After having recovered 32 desperately needed pounds in only six weeks through the elimination of gluten and clearly starting to become ill again after reintroducing it, I frankly did not need a biopsy to convince me that I had celiac disease. My recovery from the much milder condition that the reintroduction of gluten had caused was much lower than my initial recovery had been. There was simply no way whatsoever that was going to another gluten challenge for the sole purpose of convincing and inappropriately dubious Doctor! I was entirely satisfied enough to remain totally gluten free for the rest of my life . I did make brief attempts to reintroduce small amounts of processed food back into my diet a year or two later. And every time after a few items I always started getting problems again and always discovered that some product had contain gluten or wheat that had not been included on the label. So I have remained gluten-free ever since and enjoyed far better health that I had ever had before in my life before going gluten-free. And I've developed a very high level of skepticism of the medical profession as a result of that experience. That skepticism saved my health about eight years later when I developed iron overload after coming up with iron saturations of over 100% and serum ferritin of 1800. Despite those incredibly strong indications (and joint pains), my doctor refused to do further work up for hemochromatosis.(Apparently because insurance considerations were his primary concern) he even contacted the doctor I had gone to for a second opinion and, after a 30 minute conversation, convinced him to cancel the MRI that he had scheduled to check for hemochromatosis. ***I have to wonder whether part of the reason for this doctor's astounding resistance to considering the very obvious need for investigation of hemochromatosis was due to my medical records suggesting that I was allegedly a hypochondriac because I insisted on following gluten-free diet despite never having officially been diagnosed with celiac disease.** This is probably a prime example of the serious harm that can result patient's from doctors refusing to place any weight on patient experience, FWIW, I was later confirmed to have hemochromatosis by no less than four gold standards of diagnosis MRI, liver biopsy, number of phlebotomies to depletion and C282Y++ by gene testing. I fully appreciate the difficulty of making diagnosis of celiac disease as accurate as possible. I also fully appreciate the desire to avoid putting patients unnecessarily or lifelong restrictive diet by a false positive. However, I think ***it is a very serious error to not counterbalance that by taking patient experience fully into account when considering the probabilities and also not taking fully into account the serious harm that can be caused by gluten challenges that have a very high potential for giving false negative diagnosis*** I also feel very strongly that insurance companies are having a highly toxic effect on the accuracy of diagnoses - putting a very heavy thumb on the scales to go to extreme lengths to avoid false positives at the expense of causing a very high rate of false negatives. The United States has the most expensive healthcare per capita in the entire world by a huge margin - almost double the next highest. Yet in terms of quality of healthcare delivered it consistently ranks in the mid-20s to the mid-40s. IMHO, insurance companies are responsible for a great deal of that incongruity, I also suspect that the toxic influence of insurance companies is contributing to the reluctance of doctors fully taking patient experience into account.
I took iron supplements and though my iron level was too high, my ferritin only raised from 19 to 25. How can I raise my ferritin without raising my iron levels further. Am I missing something?
You must write your politicians and tell them to allocate money in Bills for celiac disease research and awareness. Write your senators and house representatives.
Very interesting thanks. I think gluten and dairy sensitivity go hand in hand. I gave up gluten initially and intestinal distress resovled in the main but still had headaches. Gave up dairy and headaches disappeared!
I've been diagnosed celiac since 2013 and eating a strict gluten free diet. Unfortunately my iron has been horribly unstable and I'm taking iron suppliments. It's been over a year now and my iron is very slowly going up. I'm beyond frustrated.
Ohhh I can feel it so badly as well. Mine was severe in other ways. Also affected the nervous system especially the sympathic nervous system. Constantly had attacks of heart racing with 150-170 BPM and blood pressure spikes to 230/120 ish. Later on problems talking / finding words were present and tingling sensation on one face side... Luckily after endocrinology / heart specialist my home doctor run celiac blood work and voila... Had my answer. After getting vitamins back to normal level and cutting gluten out I felt better than I have felt the last 5 years. ❤ Celiac truely is a chameleon with a lot of faces. 😢 Good luck everyone finding out your proper diagnosis
Just wondering why there are so many ingredients in your breads? Some of these ingredients can contain different types of gluten, according to experts on Gluten Intolerance 😮.
I have a gluten intolerance and I’ve been eating this brand for years, no issue. Also, have you ever tried to make gluten free bread? It’s tough lol. Certain ingredients are needed for them to mimic standard bread products.
..any possibility of getting this information to Doctors and GPs in Ireland?. They are totally ignorant on this subject and are totally failing to investigate or recognise the significance of short stature in children. My 20 year old son has just been diagnosed at University Health Center with Celiac disease and suffered from childhood with short-stature, sinus and digestive issues. I was completely dismissed by our GP when raising the issue - no, it is too late for my beautiful son to recover his height.
Step 1 should be to start a strict GF diet if you suspect the problem is gluten. If diet works, "then" you have options. You can go back to gluten to see if symptoms return or get on with your life staying on the diet. It's not complicated, just common sense. Of course, if you must have an official diagnosis, then go through the entire process and be prepared to suffer.
BECAUSE AS YOU GET OLDER YOU BECOME LESS EFFICIENT IN metabolism of nutrients................. then you slowly lose the ability heal fast then you lose..
As a male, it took 30 years to be recognized as a seronegative celiac disease with a Marsh 3 b, after 5 years Marsh 3a and after 7 years almost in remission depsite having an high abberant t cell gamma delta population. Comorbities: gluten ataxia, chronic duedonitis, teeth enemal defects, hypothyroidism, metabolic syndrome, gerd, ibs, bile salt malabsortion,gastroparesis and lymphoproliferative colitis, high eosinophilis ( cross reactivity even with random food) mast cell activation. Mentally: headaches, chronic fatigue syndrome, schizoaffective disorder/adhd ( I would called it the classsical ring of fire type).
Both those blood tests came back normal. My sister mom and son have celiac. I have been sick with painful bloating. stomach problems and those rashes for as long as I can remember. They tell me I don't have celiac though. The doctor was pretty rude about me asking for testing and refused to do anything else other than the blood test.
Current tests to diagnose celiac disease have a lot of room for improvement. No wonder they say a significant percentage of those with celiac disease go undiagnosed. The blood test may not be positive until significant amount of damage is done, and the biopsy can miss it because the disease is patchy and the small intestine is long. I have heard of people who were first told they didn’t have celiac disease because they tested negative only to find that 5- 10 years later, they indeed have it, but now with many complications.
Thx for this. Had bloodwork last week and told I have iron deficient anemia. Ferritin level 33. Sadly, I have been able to go back to historical laboratory data dating back to December 2016 and see that my Ferritin has been low as long as 8 years ago. In 2021 my Ferritin was 11!!! 9 separate blood tests over the past 8 years showing iron deficient anemia. This angers me because I’ve always been tired. I was told it was chronic fatigue, depression, etc. As a teen I was diagnosed anemic. I was diagnosed with Celiac Disease in 2020 and have adhered to a strict gluten-free diet since then. (I am 47 years old.) Sad I’ve had to suffer this long thinking I was a hypochondriac going to the doctors all the time with no answers received. I have tried iron supplements over the years and they always rip my guts apart. I started Feramax yesterday and I’m already paying the price. I just ordered a Heme Iron Supplement so will see if that is more gentle. And I know Vitamin C/Absorbic Acid helps with absorbing the iron. I will call my GP tomorrow and request a follow-up appt to discuss iron infusions to get my numbers back up. Maybe my hair will grow back too.
I am 82 and diagnosed with celiac disease about 8 years ago and almost the same time with inclusion inflammatory myopathy, slowly progressing from many years before. I was wondering which was the chicken and which the egg. I am on a strict gf diet and no treatment for myopathy. This is the first ever comprehensive information I have found. Thank you. All I can do is fight depression, take my supplement an wait until the end ...
Hi dear Plz guide me. I'm celiac and my age is 37 and have been trying to get pregnant for the past 1 and a half years. According to my gyno I don't have any fertility issues but I'm not able to conceive naturally. Now she is suggesting to me IVF. Should I go for it? Plz give ur valuable suggestions.
