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Current Issues and New GI Doc

Ennis-TX

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Ennis-TX Grand Master
Ennis-TX
Posted

So my primary physician has scheduled to see a new Gi Doctor for a scope to check on my bleeding and updates on intestinal health. They have me coming in for a evaluation, and talk this week, I am honestly worried this new doctor is going to dismiss my celiac and want to retest me. I have this overly defiant idea that if he tells me to do the gluten challenge I will order a monte cristo (bucket list food item) and eat it in his office and let me watch me for the next 8 hours laid out on his office floor vomiting and drifting int and out of it in pain.....Call me crazy but my reactions are so bad and my weight so low I fear it would kill me.   Anyway going in there to get a colonoscopy and a endoscopy later to look and try to find why I have random bloody stools and sometimes bloody globs of yellow mucus. Thinking this might also be connected to my night sweats and weight issues. Thoughts, ideas, and prayers welcome.

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cyclinglady Grand Master
cyclinglady
Posted

Ennis, 

In your case, a gluten challenge would be crazy!   A severe glutening could trigger something even more serious.   It is a good idea to check for other issues that may be happening.  Something is wrong for sure.  

Ennis-TX Grand Master
Ennis-TX
Posted
  • Author

GI doctor was in doubt about my Celiac disease, he ordered a full celiac panel and scheduled a colonoscopy and endoscopy along with biopsy. I told him I have been gluten free for over 3 years and  not been major poisoned since June. They took the blood anyway sorta blowing this fact of the matter off and I told them I would probably test negative since I have not been eating it......Now I have a feeling they are going to try to discredit my previous diagnoses. Previous diagnosis was done between a doctor I had a while back and my dietician at the time. No one has any of the paperwork it seems anymore.

cyclinglady Grand Master
cyclinglady
Posted

Sorry to hear that.  Lesson learned:  obtain and maintain copies of ALL of your medical records!  I started doing this back in 1996.  I even maintain a spreadsheet for my family as well.    Impresses any new doctor.  the family history chart helped my niece get her Crohn's diagnosis.  Her GI said he had never seen one so detailed.  

Well, you should get celiac antibody testing done annually anyway.  Hopefully, they'll find the source of your current issues.  

 

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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

      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

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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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      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!
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