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Some Good News, Some Bad News

Idiote Savante Goddess

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Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted

Saw the allergist yesterday. She agrees that I could have had a false negative response to the bloodwork bc of my wheat allergy, so I'll do my genetic testing as soon as I know how much BlueCross-Blue Shield will cover (or perhaps, more correctly, won't cover).

The bad news is that the Elavil the neuro prescribed for my migraines has made me manic. They don't know if it will resolve on its own now that I'm no longer taking it, or if I'll continue to have manic episodes.

What do all those boring neurologically typical people do for fun?

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ravenwoodglass Mentor
ravenwoodglass
Posted
Saw the allergist yesterday. She agrees that I could have had a false negative response to the bloodwork bc of my wheat allergy, so I'll do my genetic testing as soon as I know how much BlueCross-Blue Shield will cover (or perhaps, more correctly, won't cover).

The bad news is that the Elavil the neuro prescribed for my migraines has made me manic. They don't know if it will resolve on its own now that I'm no longer taking it, or if I'll continue to have manic episodes.

What do all those boring neurologically typical people do for fun?

Sounds like your allergist is pretty savvy. Hopefully she told you that whether or not your eating gluten will not effect the gene test.

I am not surprised by the reaction you had to the Elavil, many of us have bad effects on psychotropic meds. My migraines were controlled completely by the gluten-free diet. Have you started it yet? Hopefully between time and the diet the manic episodes will resolve. Make sure that you are taking a sublingual B12 in addition to your other vitamins it will help the brain and nerves heal.

Ursa Major Collaborator
Ursa Major
Posted
Hopefully she told you that whether or not your eating gluten will not effect the gene test.

I don't understand this sentence. Anyway, nothing you eat will effect your gene tests, it would only effect your bloodwork or biopsies.

I agree that your migraines as well as the manic symptoms might both resolve on a gluten-free diet.

momandgirls Enthusiast
momandgirls
Posted

Genetic testing will not tell you whether you have Celiac Disease. It will only tell you if the have the genetic make up for the disease. A huge portion of the population carry the genes for Celiac - most will never develop the disease. A genetic test can, however, rule out Celiac.

Ursa Major Collaborator
Ursa Major
Posted
A genetic test can, however, rule out Celiac.

No, not so. There are documented cases of people having full-blown celiac disease with completely flattened villi who don't have the 'official' celiac disease genes.

Scientists have acknowledged that it is likely not all of the celiac disease genes have been found yet.

ravenwoodglass Mentor
ravenwoodglass
Posted
I don't understand this sentence. Anyway, nothing you eat will effect your gene tests, it would only effect your bloodwork or biopsies.

I agree that your migraines as well as the manic symptoms might both resolve on a gluten-free diet.

I guess I worded that badly, what it means is that the gene test is not effected if you are not eating gluten. I didn't want the poster to think she has to do a challenge if already gluten free.

Idiote Savante Goddess Rookie
Idiote Savante Goddess
Posted
  • Author

Well, I've been off the Elavil for almost two weeks -- I feel energetic, but not manic -- the issue is the manic mood made me EXTREMELY irritable -- I got a verbal reprimand at work. However, I've also noticed that espresso, which never made me jittery before, now makes me jittery. So, I'll just have to ride it out and see what happens.

Yes, the allergist knows I can't do a gluten challenge and that I don't need to eat wheat for the gene test. I do understand that the gene test will show only a propensity toward gluten intolerance or celiac, not the disease itself.

The sublingual B-12 sounds interesting -- is it yeast-based? I have a yeast allergy as well.

I'm gearing up to go gluten-free next payday. I'm already gluten-light -- it'll just mean no hot barley cereal when the weather gets cold, no Ry-Krisp w/peanut butter for lunch. I'm allergic to rice as well, but there's always corn and quinoa and gluten-free oats.

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splash Rookie
splash
Posted
No, not so. There are documented cases of people having full-blown celiac disease with completely flattened villi who don't have the 'official' celiac disease genes.

Scientists have acknowledged that it is likely not all of the celiac disease genes have been found yet.

I have full blown celiac disease (GI symptoms, skin issues, neurological symptoms) and don't have the "official" celiac disease genes. I see the reasoning to want to test but the only real test is to eliminate gluten from your diet. If that works, stick with it. Some people on this board have additional food intolerances - I don't know if those work in a similar way to gluten, but it might be worth trying out different eliminations.

confused Community Regular
confused
Posted

i also have celiac without the celiac gene. I also have Dh, so there is no denying im celiac.

paula

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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

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