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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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    • hjayne19
      Hi @trents Thanks for the reply. I appreciate it. I have been on an iron supplement for 4 years. (Started at Ferratin at 6) and has always sat around 20-30s. I also have been a high level athlete so I’m sure that doesn’t help. I will sometimes get readings around 50 but haven’t stopped my supplement so assuming it can be from taking it the day before.  Also get muscle twitches too which maybe is pointing to some other deficiency.    My magnesium vitamin B and D were all normal right before going gluten free but I’m also reading more about zinc and the different types of b vitamins that may affect some symptoms as well. So will have to look into that. When can iron stores expect to replenish? Does it take awhile? 
    • cristiana
      @trents - THANK YOU, that is a really helpful and interesting post. I have had fairly extreme symptoms. Being a veteran hypochondriac I've been imagining all sorts and what you say makes me think I've probably been up to my usual catastrophizing!    That said, I foresee another colonoscopy appointment if things don't settle down soon., and if I have got diverticulosis I guess that is how they will find out. I've just checked some statistics and I had no idea until I googled the condition that such a large percentage of the UK population has diverticulosis, i.e. 50 per cent by the age of 50, and that diverticulitis itself - i.e.  inflammation of the diverticular - affects 5-25 per cent of the population.  Oddly enough I knew a young woman with it and she told me years ago that it felt like there was a baby's foot wedged into her stomach at times, just like when she was expecting a baby, and this is exactly how it feels to me at times (although I realise as a man you will not be familiar with this sensation!)   I also do have an umbilical hernia which I think plays me up. On your other earlier points - I have read elsewhere that sudden intake of fibre can cause a lot of discomfort.  It reminds me of the time I swapped a chocolate bar with a muesli bar with apricots in an effort to be healthy, and there was a stone in it which broke my tooth!  No pain no gain I suppose!  And re: new intolerances, that too is very likely.   I will start keeping a food diary and my husband has today bought me some peppermint tea, hopefully that might help disperse some of the bloating! Thank you.    
    • trents
      Welcome to the celiac.com community, @hjayne19! Because of the damage done to the villous lining of the small bowel by celiac disease's inflammatory process, absorption of nutrients from our diet is generally compromised and over time it is typical for those with celiac disease to develop nutritional deficiencies. Your low ferritin is evidence of that. We generally advise those who have been newly diagnosed to invest in some high quality and high potency gluten-free vitamin and mineral supplements to address this. We're talking about more than a multivitamin. We usually advise B-complex, D3 (5-10k IU daily), zinc, and magnesium glycinate. In particular, magnesium can be helpful for sleep issues and the glycinate form is important as it is assimilates much better than a lot of common forms you see on supermarket shelves which are formulated more for shelf-life than the are for assimilation. Has your ferritin rebounded yet? You may also need an iron supplement if you aren't on one already. Do you have Costco stores near you? Costco's Kirkland Signature brand and Nature Made brand of vitamins and supplements are good quality, economical choices and will be labeled gluten-free on the packaging if they are.
    • trents
      Making significant changes in our diets, even when it is in, what would we are told by the experts, a healthy direction, can be upsetting to our system until it adjusts. To make an analogy, it's like beginning an exercise regiment when we don't ease into it gradually. That's one thing that occurs to me as a response. And I think as we get up in years this becomes more and more true. We become less adaptable to change. The other thing that occurs to me is that you may have added in things, that though they are nutritionally dense, may be things that you as an individual may have some degree of intolerance to. You mention nuts and citrus. Those are packed with nutrition but also high in histamines. And citrus is not only high in histamines but is also a histamine liberator. I know from personal experience there are some things I can eat occasionally, in limited amounts and I'm okay. But if I eat them too often or consume large servings they will give me an upset tummy or a migraine attack or both. And you might also look at the possibility that you have developed diverticular disease. Nuts and seeds are a no no for that I understand.
    • hjayne19
      Hi! I am a recently diagnosed celiac and my first post here.    hoping for some help. I initially didn’t have any gastric symptoms before diagnosis. Mostly night sweats almost every night and bad insomnia. Sometimes 1-3 hours before falling asleep but mostly waking at 4 am and not able to fall asleep. I felt like a zombie. I have also had low Ferratin for years. Sleeping got a little better I also realized I wasn’t eating enough carbs after working with a dietician.    it’s been 3 months gluten free. I definitely am on the more sensitive side I would say. I get really bad panic/doom anxiety which was bad before diagnosis and has since improved but comes in waves. Now my insomnia has been bad again and looking for some advice. I try to keep a strict routine morning and night. But can’t seem to turn my brain off even though I’m exhausted.    Anyone else going through something similar? 
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