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Just Diagnosed Today...need Advice.....? Please Help!

Krystle56

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ShayFL Enthusiast
ShayFL
Posted

It may be hard to get all traces of gluten out of that bread machine and pasta maker if used even once before. :( Clean...clean...clean and clean again. Maybe you will get lucky. Gluten is insidious......So if you make bread or pasta with them and get symptoms of "glutening" dont use them again.

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Krystle56 Newbie
Krystle56
Posted
  • Author

I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

Amber M Explorer
Amber M
Posted
I think we used the bread machine once and never used the pasta maker so I'm going to make sure and wash out the bread machine really well prior. Like soak everything and then wash it and then soak it/wash it again.

Good news......I'm getting to see the GI specialist sooner.......as in this Friday!! I am so relieved. It was a bad feeling thinking I'd have to wait nearly 2 months.

The current clinic said something like "your test showed that you have celiac. With 9 being you have it, you scored an 18"....or something like that......does this make sense to anyone????!!!!!!!!! I mean I know I have it, otherwise I wouldn't be feeling so much better after just under a week of gluten free....but is that a normal way to tell someone something like that? I'm so confused. It makes me feel like I'm off the charts!

I personally haven't heard it put like that, but I am fairly new to this too. It seems like they made it sound like "no big deal." Obviously, they don't know much about it. One doctor I went to once a few months ago said, "Why bother to spend the money on tests (I have insurance), just stop eating it, and we'll call it Celiacs." And further said, "the only way you can tell is with a colonoscopy anyway." I had already read a multitude of medical stuff and I knew she was "DUMB." She is the same one who told me that I had a "thickened Hymen", when in reality, it turned out to be a prolaspsed bladder! DUMB! We don't want to believe doctors can be stupid, but some times they really are! How did they get through medical school anyway? I haven't found a good celiac doctor yet except my allergist. Still looking.(MD) My dentist is a celiac! At least he can help the tooth sensitivity!

Glad your going on Friday, I think you need attention now! Good luck, let us know.

Krystle56 Newbie
Krystle56
Posted
  • Author

I don't even know what test it was that told them I had celiac....I had so many tests it's hard to tell! I was assuming a blood test but maybe I'm wrong.

lizard00 Enthusiast
lizard00
Posted

It was more than likely the tTg test- that stands for tissue transglutaminase. It's a blood test. The test is pretty specific to Celiac. If that specific test comes back elevated, it's usually pretty indicative of Celiac Disease. Did they say anything about doing an endoscopy?

bjn12670 Rookie
bjn12670
Posted

Hi Krystle, my name is Becki and Iwas also just diagnosed on Friday to be exact. I am not even sure if I am posting to the forum correctly. I have a lot to learn about this disease and this website. Anyways.... I know exactly how you feel and I too, am so overwhelmed. This site has been great and I am looking forward to learning more through all the experts on this site. I guess we will learn together. Best of luck and hang in there.

quote name='Krystle56' date='Nov 4 2008, 06:18 PM' post='481656']

Hi everyone :)

My name is Krystle, I was just diagnosed with celiac today. After being shocked, I was upset, and now I'm thankful that I know what is. The problem is, I don't meet with the dietician until next Thursday and I need some help with what foods I can/can't have....what to shop for, etc. I'll tell you a little about me, I'm 22, I'm a college student, and I live with my boyfriend. We probably don't eat as healthy as we should so this is going to be good for the both of us. (I don't expect him to make any life changes but he's agreed to try new foods with me, along with seeing the dietician). The thing with being in college is, I like to grab something quickly in the morning and bring it to school with me for lunch, because I'm on campus all day between class and work. Cooking and baking are two of my favorite things to do, so I am really willing to try new things. I've been searching the web for pages with gluten free recipes and there are so many....I don't know which are good and which are bad!

I don't really know anyone else with celiac (or else I do and just don't know they have celiac)....so I think this is going to be a great resource for me! I'm trying to stay positive so this will be helpful I think :)

Thanks in advance!

ang1e0251 Contributor
ang1e0251
Posted

Hi to both new members. I just wanted to tell you if you don't want to mess with the breads much in the beginning, you don't have to. If the flours are hard for you to find it could be a pain for awhile. I just used corn tortillas in the beginning and I liked them so well I don't make much bread even though I have a machine. I toast tortillas with butter to eat with eggs, you can roll sandwich fixings in them, for your grilled cheese, I make quesadillas; spread tortillas with butter then brown in the skillet with cheese in the middle.m.m.m... I make mini pizzas on the tortillas. I toast them first so they're a little stiffer.

I like apples with peanut butter and rice krispy squares only make them with gluten-free Rice Chex. Just dive in and start cooking! It's not as hard as it seems and you'll get the hang of it fast. You are a smart college girl!!

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      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? 
    • 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
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      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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    • 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!
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