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Hello, Introducing Myself


CeliacShack

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CeliacShack Rookie

Hi, just thought I would formally introduce myself. I've been posting for a short while.

I've had mysterious illnesses much of my life. I've had lifelong struggles with migranes, stomach problems, insomnia, fatigue, depression, panic attacks and anxiety. I would occasionally pass out. My weight has gone up and down numerous times, and my menstrual cycle was irregular to the point of going years with none. I would sometimes have strange outbreaks, like hives, swollen eyes and lips, terrible mouth sores, or odd skin eruptions all over my hands. Many of these things I just accepted as quirks. I wasn't encouraged to go to the doctor, and I learned to just "be tough".

Soon after I married to my husband of 13 years, we tried to conceive, with no luck. About 2 years in, I was diagnosed with PCOS (Polycystic Ovarian Syndrome). I latched onto that as an answer to many of my issues. With a lot of time (4 years) and effort, diet changes, weight loss and some meds, I was able to conceive twins, and give birth succesfully. I then miscarried twice, and finally had my third child, four years after my twins.

After a few very stressful years, and the birth of my third child, I began to struggle more. I could not lose weight no matter what I did. I would work out for an hour a day with no results. Then, my husband got very, very ill, late last year. He was in the hospital for a week, then out briefly and back in. Not long afterwards, my health started to decline, very rapidly. I believe the stress kicked my celiac into high gear.

I became fatigued to the point of having to drag myself out of bed each morning, and spending much of the day on the couch. My weight ballooned, even though I didn't eat much, and had no appetite. I always looked pale and swollen. I didn't have a regular BM for months on end, they were all loose, and quite often bloody. I had shooting and dull pains in my abdomen. My sciatica occasionally acted up, my joints ached and I had constant pain in the heels of my feet. I could not shake my low grade depression, despite being on meds. Anytime I tried to exercise, my hands and knees would tremble. I woke up one morning shaking all over, unable to get out of bed at first.

I went to my PCP about the pains in my abdomen, and other concerns and he thought it was gallbladder. After several tests with no results, I was sent to a GI, had a endoscopy and colonoscopy, and was finally diagnosed with celiac and gastritis, atthe age of 35.

I've been gluten free since late June, and have seen improvement in some ways, and still struggling with others. Still very fatigued, taking supplements, and getting additional blood tests within the next day or two. I've lost about 16 lbs thus far, which is nice, but I'm most concerned with healing. I'm really grateful to have found this forum, and discover so many other people "like me". Congrats if you made it through my ramble. :)


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CeliacShack Rookie

One more thing, if anyone has any advice for strengthing hair and teeth, I'd love it. I've been losing hair like crazy and my teeth are weakened. I've heard calcium and iron?

rosetapper23 Explorer

Welcome to the Board! I'm sure many folks will have helpful advice to share with you. Regarding the teeth and hair, you might try adding magnesium as well as calcium. Brands of magnesium that are easy on digestion are Nature's Way Magnesium Complex and Bluebonnet liquid magnesium. Also, a good collagen product, like one made by NeoCell, will help with your hair, too, as will chelated zinc. Some of us have also had good results from BioSil, which contains silicon. Lastly, a good Vitamin B complex could help with your overall symptoms. I use Country Life Co-Enzyme Vitamin B Complex. It sounds as though your body has a lot of healing to do, and it can take 1-2 years before you'll feel completely well. Be patient--you WILL be well soon!

DavinaRN Explorer

My old PA (she moved away) told me Biotin supplement. Of course we never thought to investigate the cause; more concerned with low grade fevers.

joolsjewels Newbie

I tried Biotin for a couple of months after several hair dressers recommended it. It actually made the situation worse! I too have PCOS and of course the thinning hair goes right along with that. Since my GYN put me on metformin two months ago, my nails are growing like crazy and are much stronger. I have not seen a difference in my hair.

CeliacShack Rookie

Thank you all for the advice and the welcome, I will check out the products! I just had blood tests this morning (10 vials) to check my levels, so I'm hoping I'll get some answers.

NightOwl Newbie

Thank you all for the advice and the welcome, I will check out the products! I just had blood tests this morning (10 vials) to check my levels, so I'm hoping I'll get some answers.

Hi and welcome!

Besides having studied Cosmetology, which led me to participate in hair forums, I also was studying Holistic Nutrition so I know quite a bit about nutrients, and one that I researched and has a lot to do with hair health but is also related to PCOS is iodine, please read go Open Original Shared Link.

Biotin is part of the B-complex and I learned that it's never a good idea to take a single B vitamin without properly supplying the other known 10 factors. Silica has worked for me, more specifically with MSM, a form of sulfur, another mineral that plays an important role in hair and skin health.

Magnesium "oil" (or liquid mg. chloride), intended for transdermal use, is applied by some people directly on the teeth, with a brush, to help strengthen them, especially when the enamel is worn out and the teeth look translucent. I don't know if these days it can be found at health food stores but I've been ordering mine online from Open Original Shared Link because their prices are very good.


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CeliacShack Rookie

Hi and welcome!

Besides having studied Cosmetology, which led me to participate in hair forums, I also was studying Holistic Nutrition so I know quite a bit about nutrients, and one that I researched and has a lot to do with hair health but is also related to PCOS is iodine, please read go Open Original Shared Link.

Biotin is part of the B-complex and I learned that it's never a good idea to take a single B vitamin without properly supplying the other known 10 factors. Silica has worked for me, more specifically with MSM, a form of sulfur, another mineral that plays an important role in hair and skin health.

Magnesium "oil" (or liquid mg. chloride), intended for transdermal use, is applied by some people directly on the teeth, with a brush, to help strengthen them, especially when the enamel is worn out and the teeth look translucent. I don't know if these days it can be found at health food stores but I've been ordering mine online from Open Original Shared Link because their prices are very good.

Thank you for all the advice, I always find something new to research on this forum! :)

  • 3 years later...
Larry Gessner Newbie

Hello, I am Larry Gessner. I thought I would just say hello and let you know that I feel for all of you that have been diagnosed as celiac, and those of you who have other aliments that fall in line with having to have special diets. Just a little background on me. I live in ND and work for as a Quality Control manager for a flax company. I myself have not been diagnosed with celiac, however I have friends who are. Back in 2006 I woke up one morning and could not figure out why I felt so bad. I mean I felt really bad! It took me 10 or 15 minutes to get out of bed and I knew something was terribly wrong. I managed to get to the kitchen and make coffee but I was so weak and felt like I had contracted some kind of bad flu. Hours later I dragged myself to the local clinic and my bloodwork came back normal, so they had no idea what was going on. The best way that I can describe my condition is that I could not even pick up a broom and sweep the floor if I wanted to. This was devastating for me and because the doctor felt it might be rheumatoid arthritis she set me up an appointment with an arthritis specialist. I had to wait for two months to see this doctor and when I saw her she diagnosed me with muscle crystallization. I had never heard of this before and it scared the heck out of me. She prescribed a medicine and sent me on my way all in about a half hour. At the time I was a Sheriff and I felt it wasn't fair to my deputies that they had to cover for me because I could not work. it appeared that I was not getting any better and so I resigned so that my spot could be filled and they could hire another deputy. After a year of not making any progress I felt I needed a second opinion. I made an appointment with another doctor and He told me that the first doctor did not do a certain test to rule out rheumatoid arthritis. So they took more blood and my ANA was 364 when it should have been 124 so now they knew that my autoimmune system was attacking itself and prescribed medicine to help. I started to make progress but my strength was gone and I knew that any job I would have to have would be a desk job. To this day I have no idea what I ingested to make this happen and at 61 all I can do is ride it out until I can retire at 62.

I stated that I feel for all of you because I cant imagine what it must be like to not be able to go to the store pick out whatever you like and make that meal. I can only imagine what it must be like to not be able to go to restaurants and pick something off the menu. I realize that thing have progressed a lot over the years but since I started doing research on being Celiac, I see that one of the biggest problems you face is thinking you are getting Gluten free food and it turns out to be cross contaminated. Since this is now celiac Awareness Month I am  trying to get involved with any groups in my state to see what I can do to help get the word out. In Bismark ND they just opened a Gluten free bakery and it is its own separate facility. I hope that my state is doing all that it can to provide services for Gluten intolerant people and that someday this affliction is a thing of the past. I wish you all the very best and keep a positive attitude.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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