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New Diagnosis--symptoms Worsening!

girlywhirly

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girlywhirly Newbie
girlywhirly
Posted

I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??

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confused Community Regular
confused
Posted
I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??

I was the same way, I felt awesome after the first few days, then i started to feel terrible again. Then I found out i was casein intolerant, which has been very hard for me to deal with. I still have good and bad days. I hear it takes about 6 months to an yr to actually feel great.

I am actually in the process of contacting all of the product companies to see if all the stuff i use is gluten free. I feel like I am still getting glutened from something, but i have not been able to figure it out yet.

Maybe give up casein for a while and see if u feel better. Most celiacs cant tolerate dairy while they are healing.

paula

girlywhirly Newbie
girlywhirly
Posted
  • Author

Thank you! I will try to eliminate casien and see if it helps...I'm so miserable it's worth trying anything!

Nancym Enthusiast
Nancym
Posted

A lot of people adopt a very simple, very restrictive diet at first because the healing process can be pretty rough. You might want to google on SCD and see if that might help you out, but leave out the dairy products at least at first.

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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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      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!
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