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Is it worth getting tested?

Tbetteridge

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Tbetteridge Newbie
Tbetteridge
Posted

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

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Fundog Enthusiast
Fundog
Posted

I feel your pain.  Literally, I do.  It all comes down to us each as individuals.  I get "The Rash" and after both blood test and the skin biopsy came out negative, the next step would have been endoscopy.  But I have been fantasizing about a wall "mural" made of sandpaper for 16 years, and had already given myself cellulitis.  Could I stand to go back to eating gluten for three months?  Unthinkable!  So all I know is, gluten makes me want to skin myself alive.  And I'm not alone.  There are several on here who are undiagnosed or self diagnosed.  Good luck in whatever you decide. :)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I'm thinking it won't change my lifestyle, I already avoid gluten like the plague. Two of my children are gluten intolerant as well as have other food allergies. So I know what to look for. For me it came on within the last 6 months. My whole house is now gluten-free, even my husband is on board as he sees how much more pain this causes me. (It doesn't cause my children nearly the pain/symptoms that I get, which is why I think I have celiac vs an intolerance). 

cyclinglady Grand Master
cyclinglady
Posted

Only you can decide if it is worth getting an official diagnosis.  

I can tell you that I am officially diagnosed (3 years).   Just a lucky catch during my GI consult for a routine colonoscopy (Yep, am over 50).  Anemia was my only known symptom.  No tummy issues.  My hubby went gluten-free 15 years ago when my allergist and his GP suggested going gluten free.  It worked.  The first year was a struggle of doubt and cheating on the diet though.  He would be the first to tell you that I have had it easier from family, friends , and medical regarding support.  Will he do a gluten challenge?  No.  He is thankful for my diagnosis.  Now, our daughter gets tested every few years and her doctor does not hesitate to check.  celiac disease is genetic.  It can be symptom free. It can cause unknown damage (I have had fractures from osteoporosis.)  Accommodations from schools (even university dorms), is necessary and a diagnosis paves the way.  

Again, it is a individualized decision.  I wish you well.  

cstark Enthusiast
cstark
Posted
12 hours ago, Tbetteridge said:

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

I am right with you.  I had the blood test and found the intolerance.  However, if I do go for the biopsy (don't think I will), I would have to be on gluten and that sends my body completely out of whack.  I don't have "the rash" of GI issues, but I do experience the neurological side of consuming gluten.  Not fun by any sort of the imagination!

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

cstark Enthusiast
cstark
Posted
18 minutes ago, Tbetteridge said:

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

When you go off gluten and then accidentally get cross-contaminants, your body will go into hyper drive to get the poison out of system because it was starting to get used to operating without the gluten.  It stinks during the reaction time, yes, but hang in there. :) 

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mama.liz07 Apprentice
mama.liz07
Posted

I'm essentially in the same situation you are, except my blood test came back negative.  I don't think I need the definitive diagnosis to eat like I have celiac (i.e. be really careful and not cheat).  I have two family members with celiac (one with a negative blood test too) and when I went off gluten I felt better than I've felt in years...and then when I ate gluten recently I felt awful again (still do).  My body does not like gluten and I likely have the gene for celiac disease.  I could even get tested for the gene which wouldn't require going back on gluten.  Positive gene, body hates gluten...that'd be enough for me.  But, if you need a more definitive, standard diagnosis I guess you do what you have to do.  Every situation is different.   Hope you feel better soon!  :-)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I have had dna gene testing done, for other reasons and I have both genetic markers for celiac!

cashs mom Rookie
cashs mom
Posted

I went gluten free a year ago to see if it helped with some of the issues I'd been having.  It did help with some, not so much with others.  But overall, I think I'm doing much better without gluten.  It's a personal decision but I've decided not to go back on gluten to have the blood tests done.  There is no cure or treatment other than what I am doing now so I don't see the point of putting myself and my husband thru the misery of going back on gluten just to get a diagnoses.  But as I said, its a personal decision.

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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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