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0Vanderbilt Celiac Disease Clinic Life with Celiac Disease: Home for the Holidays
untilTuesday, November 19 · 5 - 6:30pm PST This session of Life with Celiac Disease focuses on Managing relationships with celiac disease, boundary setting and setting up a successful holiday season. It is led by Celiac specialized Life ... -
- Scott Adams commented on Scott Adams's article in Gluten-Free Foods & Beverages10
What Brands of Energy Bars are Gluten-Free?
In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe. Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below this level... -
- trents commented on Scott Adams's article in Gluten-Free Foods & Beverages10What Brands of Energy Bars are Gluten-Free?
The problem with declaring something to have "zero parts gluten" is that we do not have detection technology capable of detecting gluten concentrations below a certain level. I think maybe 5 ppm may be the practical limit. -
- OscarScent commented on Scott Adams's article in Gluten-Free Foods & Beverages10What Brands of Energy Bars are Gluten-Free?
There is a difference for people with celiac. "Gluten Free" is the FDA term and the writer is correct that 20 parts per million of gluten could be present. So see Gluten Free does not mean there is no gluten. Kind have triggered our child diagnosed with celiac and now our scent detection dog in training marks (flags with gluten) Kind almost 100%. It... -
- trents commented on Scott Adams's article in Kidney Disease and Celiac Disease5
How Celiac Disease Could Increase Your Risk of Kidney Problems
Do you get an annual physical with bloodwork as part of your healthcare benefits? If so, kidney function tests are usually part of the CMP (Complete Metabolic Panel).- autoimmune disorder
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By Scott Adams · Posted
I've been using a Brita water filter for well over a decade without any issues. I seriously doubt that these water filter companies would use glues that would end up in your water, as that would be counter to what they are trying to do, which is to purify tap water. Please provide some specific evidence to back this claim up, as such speculation can cause undo fear, as well as reputational damage to these companies. Don't get me wrong here, I am not saying that this isn't possible, but is very unlikely. -
Welcome to the forum, @aperlo34! You said you had a colonoscopy "ordered" in July? Has that procedure happened yet? A colonoscopy cannot be used to diagnose celiac disease so I assume the order for the colonoscopy is to check for something else. The procedure used to diagnose celiac disease is the endoscopy. So, I assume you have had blood antibody testing done and it was positive and then you had an endoscopy/biopsy done to confirm those results? That is the normal process for diagnosing celiac disease. Have your constipation/irregularity problems improved since going gluten free? Some of the continuing symptoms you describe would seem to fall into the category of neurological effects (muscle twitching, shakiness, weakness and headaches) and others such as dry eyes, fatigue, stiffness and joint aches sound like they could be autoimmune effects. Are you taking any high potency to vitamin and mineral supplements? Celiac disease often/typically results in vitamin and mineral deficiencies due to malabsorption from the damage to the small bowel lining it causes. I note that your vitamin D levels are barely within normal range and the only B vitamin testes is B12. The B vitamins and D3 are very important to neurological health. And the several B vitamins all work together synergistically. So, they all need to be up to snuff, not just B12. I would suggest starting on D3 supplementation in the amount of about 5000 IU daily and also a high potency B-complex. Costco's Nature Made and Kirkland brand products are good quality and priced well and usually gluten free (and will state so on the packaging). Realize also that gluten free flours and facsimile foods are not fortified as are their FDA mandated gluten equivalents. So, when you cut out gluten, you cut out a significant source of vitamins. One thing to be aware of is that Celiac disease is an autoimmune disorder and autoimmune disorders tend to cluster. That is, when you have one you there is a good chance you will develop others in time. I don't wish to alarm you because I know you have said you already struggle with heath anxiety but many of your symptoms make me think you have some other autoimmune condition going on in addition to celiac disease. Have you been checked for Sjogren's or lupus for instance? Finally, I am including an article that is helpful to newly diagnosed celiacs in getting a head start on the learning curve of eating gluten free:
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By Scott Adams · Posted
This article may also be helpful as it offers various ways to relieve the itch: -
By Scott Adams · Posted
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. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues. -
Hi @aperlo34 Welcome to the forum. I am so sorry to read that you have been going through all of this. Firstly, I should say that your experience of anxiety is very common, and also, the worsening of symptoms is also something we see reported quite a lot on this forum. Achy joints, twitching as you describe and other symptoms were things I had and they all seemed to worsen for a while before they got better. I am a coeliac based in the UK and here, unless we are extremely fortunate or pay for private treatment, we are tested for very few deficiencies - my iron was low, my B12 borderline normal and vitamin D borderline normal, but I have absolutely no doubt in my mind that had I had the full spectrum of vitamins and minerals tested, it would have shown deficiencies. Your test reveals normal levels but it could well be you are lacking in something not on that list. My nutritionist at the time put me onto a broad spectrum supplement of every vitamin and mineral under the sun for a few months, until my GP said she thought there was too much Vitamin A in the pill so told me to stop taking it! But one thing you could do is to take something similar which will address any deficiencies you are unaware of. I would say one Vitamin which you could should supplement is Vitamin D. Your lab reports show you are borderline normal, I'd say there is quite a lot of room for improvement there. Symptoms of deficiency/low levels include: Muscle pain, Bone pain, Increased sensitivity to pain, A tingly, “pins-and-needles” sensation in the hands or feet, Muscle weakness in body parts near the trunk of the body, such as the upper arms or thighs, Muscle twitches or tremors, Muscle spasms (source: https://www.yalemedicine.org/conditions/vitamin-d-deficiency) When I first joined this forum ten years ago or so, I found myself in the company of a lot of people complaining of twitches and spasms, and others who shared that it took a few months to clear (disappointing, but realistic!) which gave me hope that what I was encountering was temporary. And indeed it was ... it took a while but things did get better. As I mentioned earlier, anxiety is problem for many newly diagnosed coeliacs and when adrenaline is running through you it can exacerbate or even cause twitching and spasms. This happened to me, my eyes twitched, my calves twitched etc. Trying to understand the anxiety and what to do about it, I bought these two publications. They helped me no end, and they may help you. https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814 (Yes, it says depression, but this book helps with anxiety, too, through physical exercise, omega-3 fatty acids, natural sunlight exposure, restorative sleep, social connectedness and meaningful, engaging activity) https://anxietynomore.co.uk/product/at-last-a-life/ (Note, there is a lot of help on the anxietynomore website). So aside from the anxiety, the other thing you need to do is to keep away from gluten. This will help you. I apologise for all the reading you have to do, but hopefully something will help. Lastly, did they test you for any thyroid issues, to which some coeliacs can be prone? Do come back to us if we can help further, and remember, there is a good chance that what you are experiencing is temporary.😊 Cristiana
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