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Interesting Dx Story

Swingin' Celiac

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Swingin' Celiac Newbie
Swingin' Celiac
Posted

Hello, I'm brand new and this is my first post. I was wondering if there might be anyone out there who can understand or relate to my story.

Well it all began with a sore throat. I've been a singer for as long as I can remember, but a few years ago I developed this awful chronic sore throat that would get worse from singing. My sophomore year in high school I barely spoke it hurt so bad. So I went to an ENT and he gave me a tonsillectomy. I though all of my problems had been solved. I was wrong.

The sore throat persisted (though I will admit that it wasn't quite so bad as it was before) and so I tried to search for another cause. I thought I was singing improperly so multiple voice lessons and lots of $ later, not change. Back to the ENT, nothing.

Finally I found a pediatric ENT would diagnosed me with mild acid reflux in the throat and put me on a PPI for the reflux. He also thought my vocal usage might have been improper, so he sent me to a speech pathologist...nothing wrong there.

Well I didn't seem to notice much of a difference with the reflux medicine. I never had heartburn to begin with, but many foods (citrus, tomatoes, spices, etc.) really irritated my throat. I went back to my original ENT (the one who gave me the tonsillectomy) and he upped the dosage...still no change. My symptoms were basically burping and a mild feeling of something (maybe acid) refluxing into my throat.

So I finally saw a pediatric GI (she was so awesome and actually cared about my problems) and she gave me an endoscopy. She found some mild irritation, possibly indicating reflux, and put me on Nexium as a last powerful resort. Although I was able to sing without quite so much pain it was still there.

The next step was to get a pH test (BRAVO), which she referred me to another ped. GI for, and what do you know?...normal pH levels in the lower esophagus. However he found some bile in my stomach and, mild flattening of the villi in my small intestines. After a blood test it was set in stone...I learned I was a Celiac on the Ides of March, 2006 (man was that a surprise).

To this day I'm not entirely sure if I had reflux or not (maybe just enough acid to mess with the throat but not enough to damage the esophagus). I know that reflux inducing foods still hurt my throat, despite my being gluten-free for over 2 mo., so who knows. Anyway I'm just ranting, so has anyone out there had to go through something similar, and if so, will the sore throat ever go away? Thanks for reading this crazy long post. :D

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Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to this board! Your story sounds familiar, I have read similar ones before. Doctors are so clueless! Actually, you got diagnosed much quicker than a lot of people here. I finally diagnosed myself at the age of 52, after having had celiac disease symptoms from infancy!

Anyway, I am sure others will chime in who had a story similar to yours. It's only been two months, give it some time, your sore throat will hopefully go away eventually. You may have other intolerances as well, though, which could be causing your sore throat, especially dairy is a likely culprit.

Hang in there!

Swingin' Celiac Newbie
Swingin' Celiac
Posted
  • Author

Thank you for your encouragement, and wow, I never knew dairy intolerance could cause a sore throat. I was beginning to wonder if I might have any troubles with dairy or other foods because I know that this is really common in people with celiac disease. I've also been noticing that rich dairy foods (e.g. milk chocolate, ice cream, and straight milk) tend to give me a stomach ache and lots of burping etc. but I can never tell if its just the normal celiac symptoms or something more. Also, another interesting note, is that my doctor said that maybe the gluten intolerance might be messing with my throat, but I think I've ruled out that by now (unless I'm ingesting gluten without knowing it [i sure hope not]). Anyway I'll try the dairy-free thing for a little while and see if my stomache or maybe even throat will start to feel any better.

mommida Enthusiast
mommida
Posted

I'm glad you have your diagnoses. So many people here have had to endure so much before diagnoses, many who eventually ended up self diagnosing.

We have heard of similar situations to yours.

Welcome to the board!

L.

Mabc Apprentice
Mabc
Posted

Hi! I'm new here too. I am not diagnosed yet, but my symptoms seem to match celiac, and I'm trying the diet to see if my symptoms improve. Sore throat is one of my symptoms. My illness became much more severe 8 years ago when my sinuses started acting funny. I've had a sore throat (and other icky stuff) ever since 24/7/366 :rolleyes:

Anyway, I'm hoping my sore throat will clear up as I continue being gluten free. If not, perhaps it is another food also like dairy or corn. I know I don't have acid reflux, yet always the sore throat. Are you drinking plenty of water? People tell me that has a big impact though I'm not that good at it yet.

Best of luck to you!

BRUMI1968 Collaborator
BRUMI1968
Posted

I just got dx'd and I've had a bizarre off and on sore throat for a few years. It literally comes on and goes away within an hour. Weird. Obviously better than having it all the time...but it's never been explained. Maybe it's aliens.

loraleena Contributor
loraleena
Posted

I also get on and off sore throat, plus chills and a general fatigued feeling. It can come and go at the drop of a hat.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • 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

      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
      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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