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Should I Be Tested For Celiac?

LadyBugLuv

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LadyBugLuv Rookie
LadyBugLuv
Posted

I have spent a good year trying to figure out what was wrong with me... i had seen the family doctor numerous times, an opthamologist, a gynecologist, a rheumatologist, and an endocrinologist... I had numerous blood tests - all coming back normal (mostly thyroid, and autoimmune related), and a whole series of x-rays.

I had HORRIBLE fatigue (especially mid-day) - couldn't function, sleep issues, felt like I was going through menopause at 26 - grandma did at 38, aunt did at 40... I have always had digestive issues (have had 2 endoscopies - GERD, and a colonoscopy)... had IBS like symptoms, though wasn't diagnosed w/it (the bloated, irregular, unfomfortable all the time, and always gassy feeling), chronic back pain and stiff achiles tendons, foggy brain, bad memory, and CRAZY irritability. There were probably more issues, but I think that suffices.

Basically, my doctors were like "you are normal" "all is normal" "take anti-depressants" - which I refused. The rheumatologist, after ruling it out because I had no tender spots, said "I think it could be fibromyalgia", but there wasn't much conclusiveness to that, either.

started seing a chiropractor/naturopathic type doctor... he said I had system-wide inflammation, started me on an elimination diet w/ shakes, and I felt like a new person (though many of these symptoms had subsided some). Well, when I was done w/ that, i started eating "normal again". felt bad, again.

took a saliva test for antibodies... came back positive for antibodies agains gliadin (gluten), and soy.

eliminated them, feel better now.

Should I be tested for celiac? Or just suffice it to say that I have a gluten intolerance? I never had blood work for it, nor did I have a biopsy.

Looking back, I think my mom's mom was probably gluten intolerant, based on what I'm reading. She had a TON of health issues, and a lot of them are linked to gluten intolerance. My sister has some of the same health issues I have too. My mom, not so much. My sister is going to be taking a saliva test soon.

I guess I just don't know what the difference between an intolerance and actually having celiac are. Everything I'm reading just kind of makes it even more of a gray area for me.

Thanks for your help! :) :)

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Liveenjoylife Apprentice
Liveenjoylife
Posted

Hi there!

I think for good measure you probably should. All the nonsese you are putting up with, it wouldn't hurt to do so. celiac disease symptoms gets confuced with ibs all the time.

lizard00 Enthusiast
lizard00
Posted

Hi and welcome :)

If you want to be tested for celiac, you must be eating gluten for the test to have a chance to be accurate. Sometimes, even with that, they're still inaccurate. So, the amount of time you have been gluten-free may have a determining factor in if you choose to be tested or not.

If it hasn't been a long amount of time, like a maybe only a week or two, if you start eating gluten again and schedule an appointment you have a much better chance of having accurate blood work. If it's been weeks or months, you'll have to go back to eating gluten solidly for at least a month, but probably closer to three to build up your antibodies again. If you can get the blood tests, I would suggest it.

There's really no blood test for gluten intolerance; the thought being that if you have celiac, you are intolerant to gluten. The difference between celiac vs gluten intolerance vs sensitivity is still up for debate, though the medical community does recognize 'non-celiac gluten sensitivity', the difference being that there is no intestinal damage being done. The treatment is still the same, a gluten-free diet.

I was always too healthy, too, but felt like CRAP! It's incredibly frustrating when you know something is wrong and no one seems to have the answer. I hope you find one soon!

LadyBugLuv Rookie
LadyBugLuv
Posted
  • Author

Well, it's only been about almost 2 weeks. but I haven't actually seen my family doctor since I've figured this out with my chiropractor. He's liable to laugh me off or try to cram unnecessary medicines down my throat...

what would the blood test show that the saliva test didn't? The saliva test was showing antibodies to gliadin/gluten... I guess normal is under 20, and I had a 22... I hadn't been eating normal for too long when I took that... 3-4 weeks maximum... I had had a total elimination diet and was on anti-inflammatory shakes. I didn't have dairy, soy, most starches (all the gluten ones), and a ton of other stuff. Oddly enough, I didn't have a dairy intolerance, though i thought for sure I have had one for years. And, I seem to be ok w/ regular milk in stuff. I always would switch to soy milk, and wonder why i got so bloated and gassy... because real milk caused me to have to rush to the restroom... well, yeah, now I've had a few things w/ real milk (coffee, milkshake), and low and behold... not a single reaction. crazy. maybe it never was milk.

thanks for your advice. I may try and see my family doctor soon. I really am not thinking eating gluten will be good. I get headaches, get tired, and get really moody, and bloated and gassy, and the list goes on.

how long do you have to eat the gluten to get the antibodies built up again?

happygirl Collaborator
happygirl
Posted

The blood tests and biopsy are the current ways to diagnose Celiac. At this point, I don't believe that the saliva tests are 'commonly accepted,' which is not to indicate that they do or do not have benefit.

If you decide to go back to eating gluten, the blood tests for Celiac that you can ask your doctor to run include:

AGA IgA

AGA IgG

tTG IgA

EMA IgA

total IgA

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      Son's legs shaking

      By knitty kitty · Posted

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    • 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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