This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Where can I buy gluten-free stuff?
Support this site by shopping at The Celiac.com Store.
What you all are going through is normal. It took a long time for celiac to progress to the point where you were diagnosed and it takes time for the antibodies to resolve and for you to return to full health but you will. Eat as many whole foods as you can, stay away from oats and limit or delete dairy until you have healed for a while longer. Some of us will react to even gluten free oats so wait until you have been symptomless to try them out. Sublingual B12 may help you heal a bit faster and do take a good gluten free vitamin. Be careful of the 'whole foods' vitamins as some will have barley or wheat grass in them. Eventually you will recognize when you get hit by CC, in my case I get a shift like I am falling sideways and an almost instant change in mood for the worse but it took a while to realize that was what was happening. If you take any prescription meds do make sure that your pharmacist knows you are celiac and that they are checking all meds prescribed. If you haven't already do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good information to keep you safe.
Welcome to you all and I hope you heal quickly.
Did you take any vitamin D supplements when that tested low? Was anything done to correct the other deficiencies you had? Do you take a multivitamin now?
I think correcting any vitamin and mineral deficiencies should be the first line of defense. It's the simplest way of ruling out more sinister conditions.
Vitamin deficiency diseases can be mistaken for other diseases. For example, a deficiency in niacin (pellagra) can be mistaken for Celiac Disease.
Cycling Lady broke vertebra in her neck throwing up. She had anemia, a result of iron and B12 deficiencies.
I understand how you can just blow off the importance having adequate vitamin and mineral levels. I did. My doctor did, too. But when a friend suggested vitamin D deficiency might be causing my severe depression, I begged my doctor to check my vitamin D level. He ranted he couldn't make any money prescribing vitamins. He finally agreed, but only because my insurance would pay for it and he could prescribe synthetic D2. My level was six. That's severely deficient. He didn't bother with checking for other deficiencies. I broke a leg, osteoporosis due to calcium deficiency. That's lame. I developed pellagra. That's "slightly dead." Then there was the BeriBeri episode with bouts of tachycardia. That's "almost dead." And from complications of vitamin A deficiency, I'm legally blind. All within three years. Yeah, sure, vitamins aren't so important. Just ignore them, they'll go away.
Please rethink putting nutritional deficiencies on the back burner.
Hope this helps. 😸
Former lifeguard and competitive swimmer here. There could be some potential issues, but I think it's pretty unlikely. Here's why I think that:
1. The water volume in a standard 25m pool is enormous (hundreds of thousands of liters). Assuming there are people swimming in the pool, any hot spots are likely to get dissipated pretty fast, so you'd have to swallow a lot of water to get a serious gluten hit.
2. By law (at least in Canada), the water inflow and outflow rates must be such that the volume of water that makes up the pool must be replaced every 24 hours in public pools. There are always some dust bunnies, bandaids and whatnot trapped in the corners at the bottom of the pool, but the main volume you're interacting with gets replaced regularly, so no build-up. Public pools are also vacuumed on a regular basis. For cleaning agents, typically on bleach and baking soda are used in my experience. Private pools are another story and there no guarantees.
3. Most public pools prohibit food on deck due to public health regulations and/or wanting to avoid cleaning up messes. This limits potential sources of gluten to personal care products on other people's skin. Considering the volume of a pool, I'm having trouble imagining this resulting in a significant exposure, but I have also swam in packed outdoor pools that taste like sunblock, so who knows. I would definitely worry if people were eating hot dogs or shotgunning beers in the pool though (definitely a thing at backyard pool parties).
4. Pool chlorine can be either tablet based, liquid based or gas based depending on the pool. Either way, it is bleach-based (sometimes literal bleach gets dumped in smaller volume bodies like hot tubs when the chlorine is off). The pool I worked at, which was newer used liquid injection, and I would imagine this is true of most newer facilities (gas is undesirable as it can leak and kill people because it is odourless - some older pools still have this set-up though). Tablets are more common in backyard pools, and it's possible that these might contain gluten in some form (I have no idea and have never checked). For reference, the concentration of chlorine in a swimming pool should be between 0.5-5 ppm, depending on the pool temperature and your region (lower for colder pools, higher for hot tubs).
So, I guess my opinion would be that a public pool is most likely pretty safe from a gluten perspective. Chlorine (or rather, the volatile gases resulting from the reaction of chlorine with biological waste in the pool) is an irritant though - occupational asthma rates in lifeguards and swimmers is quite high. Some people are more sensitive to this than others. My dad cannot swim anymore because he becomes ill for a week with severe upper respiratory symptoms (open water swimming is ok). I get similar, but less severe symptoms (part of the reason I don't swim anymore, sadly). Not sure what symptoms you experienced, but something to consider.
I look back at photos from a few years ago now and can see the inflammation in my face. I spent decades with my body fighting constantly without my really being aware. Freaked me out when I realised!
Few things to think about:
If up to 1% of pop are celiac, at much as 6% could be NCGS - further reading here: https://www.celiac.com/gluten-free/topic/117969-non-celiac-gluten-sensitivity-a-resource/
NCGS can present in the same varied ways as celiac - Not just or even primarily gastro related. I get back pain, chest pain, skin problems, eyesight problems, anxiety, depression, balance issues, nerve tremors and twitches etc. etc
Try to treat these next months as a special case. Dial your diet back and eat really basic and simple. I lived on omelettes filled with veggies, huge green salads with olive oil and cider vinegar as dressing and a very simple evening meal with maybe some meat and rice. I ate as little processed foods as I possibly could. So try and avoid sauces, anything in a box really.
Your aiming to help your body heal and to reduce the amount of ingredients going in to the basic safest foods. Eat clean and healthy and avoid any possible gluten source. Spend a bit of time learning about hidden sources of gluten too. This thread will help:
Final point. You may like me eventually have to live life without gluten and without the comfort of a diagnosis that says precisely why. This is not always easy, but what you learn about your body in the next 3 months of this trial could help you to do this. Keep the diary, note your reactions and hopefully when you see the Rheum in 3 months you'll have conducted your own science experiment and have the data you need to make a good decision.
Best of luck