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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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    • Mari
      Hi Emily, What you described is very similar to what I experienced in coping with Celiacs. I think my first symptoms started when I was about 3 and I wasn't diagnosed until I was almost 70. I got along OK util I was about 30  when I began to have more problems that the Drs thought was an autoimmune problem that they couldn't identify. Then I worked in medical labs in Bolivia for 8 months and returned to the US with more problems such as sensitivities to chemicals and increasing food intolerances. I had always had canker sores in my mouth and nose but have not had any now  since I went strictly gluten free. Before I was gluten-free I became very sensitive to hot peppers and then I could not eat anything spicy such as cinnamon, turmeric or black peppers. I have not eaten any nightshades for years. No corn or soy.  My diet now is lamb stew with rice, squash, green beans, chard, kale, collards with salt. Then eggs , chard, spinach, black beans, summer squash, asparagus, rice and salt. I eat peanuts for snacks. I have been eating nuts but may have to stop. Coconut is OK but too much sugar is not.  I am very cautious about adding back foods to my diet but hope to add back small amounts of turmeric. Take care.
    • Mari
      mcg Vit. B12Hi dlaino  - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health. I have increased my Vit. B12  can help you figure out what is happening. Just because you have gluten intolerance does not mean that your current problems are related to that. Some of the people here can give you useful advice about supplements and how much to take for improved health. I recently upped my Vit. D3 from 50 mcg to 150 mcg and now take either 500 mcg or 1000 mcg of vit. B12 sublingual daily instead of once a week.                                    Take care
    • trents
      Welcome to the forum, @Tyoung! It is possible that you are experiencing some kind of gluten withdrawal but I would thing that would have started to subside by now. There are a couple of possibilities that come to mind. One is the polysaccharide ingredients that are typically found in prepackaged "gluten-free" wheat flour facsimile foods. If you read the ingredient lists of such foods you will usually find things like guar gum and xanthan gum. Their function is to give the product a texture similar to wheat flour but they are hard to digest and give many celiacs digestive issues. I mention this not knowing if you are relying on prepackaged gluten free food items to any extent or are just choosing carefully from mainstream naturally gluten free food items. Another is that your body is just going through adjustment to a major dietary change. Wheat is a significant component to the typical western diet that supplies certain nutrients and some fiber that has now been withdrawn suddenly. Are you experiencing any constipation? Also be aware that foods made from gluten-free flour are typically devoid of nutritional value. Wheat flour is mandated by government regulations to be fortified with vitamins but gluten-free flours are not. It can be smart to compensate for this with vitamin and mineral supplements. Still another possibility is that in addition to being gluten intolerant, your also have other food intolerances. One small study found that 50% of celiacs reacted to dairy like they do gluten. That number may be on the high side in reality and more research needs to be done. However, it is true that dairy intolerance is very common in the celiac community. Another common "cross reactive" food is oats. There are certain foods whose proteins closely resemble gluten and cause the same reaction. About 10% of celiacs react to the protein "avenin" in oats like the do the protein gluten. You might try eliminating dairy and oats for a few weeks and see if your symptoms improve.
    • Tyoung
      Before my diagnosis I would consider myself pretty much asymptomatic other than a few flare ups of what I previously thought were ibs symptoms. After having iron deficiency as well I had a positive blood test and EGD. I have now been gluten free for about a month but my symptoms have gotten worse. I now have bloating, acid reflux, and pain in the upper abdomen on and off most days. I am pretty positive I am not being glutened as we overhauled our whole house to be gluten free and haven’t eaten out since the diagnosis. Has anyone else experienced a worsening of symptoms after going gluten free? Will it subside? Or is there something else I should be concerned about. Thank you! 
    • RMJ
      That is strange.  Other pages talk about testing. The one thing I like about GFCO is that the handbook for their certification process is available on their website.  I may not agree with the whole process, especially the reduced testing, but at least I can see what the process is. I wish the other certifying organizations would publish their processes. GFCO 2024 manual
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