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Just The Beginning

sillybug101

By sillybug101
in Coping with Celiac Disease

Recommended Posts

sillybug101 Newbie
sillybug101
Posted

Hello Everyone,

This is my first time on this board. As I have reading other posts everyone has been so pleasant and willing to offer advice so I thought I would give it a shot. I have not yet been officially diagnosed with celiac however my doctor thinks its either that or IBS. My blood was negative for celiac. Either way she says those with IBS do well on a celiac diet. It's only been 4 days off gluten and so far I do feel better. Although I do wonder about hidden gluten and guess I just need to keep learning where to find it :)

Any hints out there for a newbie? How about a suggestion on chewing gum. As far as I can tell the one I like to chomp on has a forbidden ingredient. I have already ordered some cookbooks so hopefully this will help with dinner ideas....I love to cook so this is putting a bit of a kink in my meals. As long as I feel better, right?

I am trying not to be frustrated or stressed. Afterall the IBS symptoms get worse with stress ;) I go back to the doctor in two months to monitor my progress and see if the gluten free diet is working.

Anyway...I just wanted to say hello and introduce myself a bit. Feel free to hit me with all the advice a new person needs. I will appreciate every bit of it.

Ciao!

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Guest nini
Guest nini
Posted

Welcome! Check out my "newbie survival kit" all you have to do is click on the link in my signature below for my website, scroll to the bottom and you will find the link to download the newbie survival kit!

Mary Contrary Rookie
Mary Contrary
Posted
Hello Everyone,

This is my first time on this board. As I have reading other posts everyone has been so pleasant and willing to offer advice so I thought I would give it a shot. I have not yet been officially diagnosed with celiac however my doctor thinks its either that or IBS. My blood was negative for celiac. Either way she says those with IBS do well on a celiac diet. It's only been 4 days off gluten and so far I do feel better. Although I do wonder about hidden gluten and guess I just need to keep learning where to find it :)

Any hints out there for a newbie? How about a suggestion on chewing gum. As far as I can tell the one I like to chomp on has a forbidden ingredient. I have already ordered some cookbooks so hopefully this will help with dinner ideas....I love to cook so this is putting a bit of a kink in my meals. As long as I feel better, right?

I am trying not to be frustrated or stressed. Afterall the IBS symptoms get worse with stress ;) I go back to the doctor in two months to monitor my progress and see if the gluten free diet is working.

Anyway...I just wanted to say hello and introduce myself a bit. Feel free to hit me with all the advice a new person needs. I will appreciate every bit of it.

Ciao!

Hi I am pretty new myself..I had negative blood work about 3 weeks ago, but at the time I had been off of gluten for about 5 weeks...but I am having an endoscopy tomorrow, and I see from reading here that it will most likely be negative as well, since I have been off of gluten for almost 2 months now..but my constant D, that will respond to nothing, not even some high powered stuff my regular Doc gave me, is finally getting better, psyllium husks help as well..

I am having a colonoscopy as well in the morning just to be sure nothing else is wrong...but the change in diet is making a huge difference, with in a few days my horrible bloating and gas went away.

It has been fun trying to think of things to fix and the way we eat, which is rather simple anyway, it is not to hard, just good natural food cooked simply, atleast until I get healed up a bit better. So far I have found Quinoa to be the best substitue for pasta, atleast for our tastes anyway.

Good luck and this site is awesome, it has been extremely helpful for me to be here, mentally and physically, and it is good to know we are not alone in this.

Pink-Bunny Apprentice
Pink-Bunny
Posted

Hey...I started on thursday. And so far so good at least for me.

I took the advice about pasta from here and got tinkyada Rice pasta...absolutely love it tastes just like it in my opinion. I've also been eating a lot of rice and veggies, peanut butter, jennie's cookies, I also got different flours (for when I feel up to making bread). But my recommendation for something is definitely the Tinkyada rice pasta. I found it was cheaper in Wegman's than my organic food mart. Along with Jennie's cookies are cheaper at wegman's.

SchnauzerMom Rookie
SchnauzerMom
Posted

Hi, I'm glad you joined us. I'm fairly new too. My husband and I have been gluten free since the middle of October. We are becoming experts at reading labels. It was hard because we both love baked goods. Nothing better than fresh baked whole wheat bread. But it causes painful acid stomach in both of us. I'm learning to bake with alternative flours, quinoa, amaranth, sorhugm, etc. So far I like all of them but I think quinoa is my favorite.

Rebecca47 Contributor
Rebecca47
Posted

Welcome everyone, I myself am fairly new since Aug of this year. This forum is so helful and so are all the people. Sometimes I like just to write because it makes me feel better. sometimes I ramble and I try really hard not to. I think someone referred it as brain fog. There is so much to learn. I cook alot of fresh veggies, boneless skinless chicken with organic mushroom over rice oh so yummy. If you have kids I know that fruitty pebbles is of to eat. Amy's is good for quick. i haven't tried the tinkyada rice pasta I have not foud it yet. anyway its all good and things will get better. :D:rolleyes:

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

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      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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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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      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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