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Hello, Introducing Myself

CeliacShack

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CeliacShack Rookie
CeliacShack
Posted

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
CeliacShack
Posted
  • Author

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
rosetapper23
Posted

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
DavinaRN
Posted

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
joolsjewels
Posted

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
CeliacShack
Posted
  • Author

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
NightOwl
Posted

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
CeliacShack
Posted
  • Author

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
Larry Gessner
Posted

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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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

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      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
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