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Celiac Disease Effects

Celia the Celiac

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Celia the Celiac Apprentice
Celia the Celiac
Posted

I haven't been on here in forever! Everything's changed. I had to go in and find my password it's been so long lolol

Well, this is the deal....

I don't really feel very comfortable laying everything right now...but I'm having major bloat issues...if you know what I mean. When I say major....I mean....I'm very embarassed to even go to work tomorrow because something happened...that I had no control over...I don't want to spell it out for you guys. I'm practically in tears. Why have I been cursed with this poop! And on top of that...my stomache's stapled and I have stomache dumping syndrome. I'm starting go get very very depressed over all this...

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mftnchn Explorer
mftnchn
Posted

Celia, you didn't mention how your gluten-free diet was going--did you fall off the wagon so to speak, or is it possible you got some inadvertent exposure to gluten? Any changes lately like new medication that you haven't checked?

So sorry you are going through this awful experience.

How long have you been gluten-free? Some people here develop other sensitivities too.

Celia the Celiac Apprentice
Celia the Celiac
Posted
  • Author

I was diagnosed with Celiac two years ago. I've ben gluten free for about a year. We all know it's very hard to stay gluten free and have probably been exposed in some way or another. My stomache bloats so bad at times I can bearly breathe. I'm from Texas. You know, the South. None of the gastro doctors around here know much about Celiac. When I was diagnosed, my doctor just said don't eat wheat barley rye or oats. I mean....that was it. No....this is what's going to happen if...no...the reason you have osteoporosis is because you have celiac...no supplement info...nothing

lizard00 Enthusiast
lizard00
Posted

I am so sorry to hear things aren't going well. :(

My first suggestion is going on an elimination diet- eating only fruits, veggies and meats. No dairy or soy, especially. Those seem to be as common a culprit as gluten.

The second is- if that seems too overwhelming, keep a food journal. Be totally specific about what you ate, even if it was one little piece of something. And keep track of the rxns; sometimes things can be delayed. The important thing is to catch the pattern and do away with the further irritants.

Oh yeah, don't feel bad. I have 3 medical schools around me (one well known around the country)- do you think any of the doctors around here that I've been to know anything about Celiac... yeah, not so much.

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I'm right there with ya! I was diagnosed in Georgia. It only took 3 or 4 yrs with active problems to by chance get the right dr, and it still took forever to figure out the problem was Celiacs!

I have had problems in the past and only figured it out after checking every single item in the house! Cleaners, soaps, lotions, bath stuff, make up, food, drinks,....huge phone bill! One company makes a small change and we pay dearly! Maybe something else is getting you sick too?

Have you looked into a kinesiologist (sp?)? They might be able to help find a way to reduce the bloat and get your system under more control for you. It was a huge help for me

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      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! 
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