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Should I Get Tested?


brandyburl

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brandyburl Apprentice

This question is probably asked a lot. I'm new. I've not been feeling well and am almost sure it is something in my diet.

Here's a little history.

Aug. 2008 gastric bypass surgery

Dec. 2008 gallbladder removed

Soon after I had severe stomach pains which led my PCP to prescribe Prilosec for what she guessed was an ulcer.Never confirmed with scope or anything.

In November of 2009 I was diagnosed with bipolar disorder and have been on meds for that ever since.

My dr recently switched my prilosec to protonix because the prilosec was no longer working.

I have episodes of hypoglycemia usually after eating meals with a lot of carbs or sugar.

I have recently begun experiencing head and neck pain after eating meals with carbs. Example: This morning I ate a bowl of quick oats. Not 30 minutes later, neck pain. This has happened with other meals such as sandwiches, pastas, etc.

I've also had pretty bad dandruff for years. Nothing I've done topically seems to work. It flares up and gets really bad at times, but never goes away completely.

Back in May 2011 I was hospitalized with severe stomach pains to which they originally thought was constipation, but then decided to call an illeus (sp?). Basically they told me my small intestine quit working. So they withheld food and water for a couple days and the pain eventually went away.

I've just been googling my symptoms and keep coming back to gluten. Maybe I'm way off base here, but I am wondering if I should make an appointment with a gastroenterologist. I would just do a trial gluten free diet, but I've read that you need to consume gluten before testing for accurate results.

I've also got a son with autism who may have issues with gluten too, just from what I've read. He craves foods with gluten in them. His favorite food is saltine crackers.

So, I guess I'll make my point. In your opinion, would it be worth getting tested for celiac or gluten intolerance?


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nvsmom Community Regular

Yes. If I were you, I would get tested.

There are many around here who have had problems similar to yours. gall bladder problems are very common as is hypoglycemia. It is usually the small intestine that is attacked in a celiac so your problems there could be linked...

Get tested soon. Test your son at the same time. And you are right, keep eating gluten until your testing is done.

Your family doctor can usually order the lab tests. I'm not sure about the endoscopic biopsy (if you go that route) since I never had one. Anyway, the most common blood tests to request are:

ttg IgA and ttg IgG

DGP Iga and DGP IgG

EMA IgA

total serum IgA

AGA IgA and AGA IgG (older tests)

There is approximately a 25% false negative test rate amoung celiacs, so if your tests come out negative you might want to do a strict gluten-free trial for 3 to 6 months (longer is better) to see if you have non-celiac gluten intolerance (NCGI). Unfortunately, a positive reaction to the gluten-free diet is the only way to diagnose a NCGI at the moment even though NCGI is much more common than celiac and every bit as nasty.

I would definitely put your son on a gluten-free diet when testing is done. A casein free diet could also be helpful. My oldest son, who has Aspergers, tested negative for celiac but I made him gluten-free and CF anyways. We've seen really noticeable improvements in his mood, concentration, and tolerance of stressful situations. He also has way less stomach aches and headaches and is gaining some weight. He had some improvements eating gluten-free, but he was even better after we cut out milk too. We just did it over 3 months so it didn't stress him out too much and he had time to settle into a new way of eating.

Best wishes with the testing. Hope you feel better soon.

brandyburl Apprentice

Thank you so much for your reply. I will be talking to our doctor about testing.

beachbirdie Contributor

Yes, it would be worth getting tested for celiac. If my son were autistic, I'd get him tested too. Oh wait...my son is an Aspie...and he does have celiac!

You don't need a gastroenterologist, a good family doctor can initiate the testing. What you need is a doctor who understands celiac and is aware of its many presentations, one who knows the full scale of tests that need doing:

Deamidated gliadin peptides IgA (DGP IgA)

Deamidated gliadin peptides IgG (DGP IgG)

Tissue Transglutaminase IgA (TtG IgA)

Tissue Transglutaminase IgG (TtG IgG)

anti-endomysial antibodies (anti-EMA)

TOTAL SERUM IgA (celiacs are often insufficient in this, and if you are insufficient ALL the IgA versions of tests are invalid...that's the only reason for this test, but it is IMPORTANT)

While you are waiting, you might want to be exploring some ways to change your diet. Paleo, primal, SCD, GAPS, all can be helpful though a little more restrictive than simply being gluten-free. Sounds like you might benefit greatly from a change, especially one that drops the starches and sugars. I know this is controversial, but some kids with autism have been seen to improve on a gluten-free diet. You might go into the topic for parents of celiac kids, or the "related disdorders" There are some discussions around here on the forum about it, here are a couple...you can use the search-box at the top of the screen to find more.

http://www.celiac.co...ism#entry851074

http://www.celiac.co...ge__hl__+autism

http://www.celiac.co... autism rising

Ahh...nvsmom...beat me to it, LOL! :P

brandyburl Apprentice

I have a dr appt on Friday afternoon for myself and my two oldest children. Hopefully our dr will listen

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    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
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      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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