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Possibly Celiacs Disease(?) And Bloodtests
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Am new to this board and haven't been diagnosed. My problems started several months ago with severe acid reflux and nausea when I eat wheat products and anything with oats. I've had an endoscopy and upper GI. The only thing they could find was a small hiatal hernia. I just went to the doc to get full blood workup today and ironically a coworker just told me about her friend's recent celiac diagnosis. I saw a lot of similarities in my symptoms SO I called my doc to see if they could test me for this. I was told they would test for malnutrition which could be an indicator but that a biopsy was the only way to know for sure.

My question is this- if I'm not malnourished could I still have this? Basically, I need to know what to do next.

Any help is appreciated! Thanks so much!

Tonya

Whoopsie- think I put this in the wrong spot. I also put this in the coping section? Am foggy-headed. Sorry.:)

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Am new to this board and haven't been diagnosed. My problems started several months ago with severe acid reflux and nausea when I eat wheat products and anything with oats. I've had an endoscopy and upper GI. The only thing they could find was a small hiatal hernia. I just went to the doc to get full blood workup today and ironically a coworker just told me about her friend's recent celiac diagnosis. I saw a lot of similarities in my symptoms SO I called my doc to see if they could test me for this. I was told they would test for malnutrition which could be an indicator but that a biopsy was the only way to know for sure.

My question is this- if I'm not malnourished could I still have this? Basically, I need to know what to do next.

Any help is appreciated! Thanks so much!

Tonya

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Tonya,

I'm sure you will get lots of replies to your questions from more experienced people than me, but just happened to see this & thought I'd let you know -- there is a whole panel of blood tests for celiac, and biopsy is not the only way to diagnose. Seems like doctors use it as the "gold standard" to confirm the diagnosis, but it's an invasive test, and you can probably find out if you have celiac first by having a reputable lab check the antibodies in your blood, and by seeing if the symptoms go away while on a gluten-free diet.

I've just found out myself, since my blood work showed celiac, that the biopsy does not always reveal intestinal damage, because the biopsies are done randomly in a scattered fashion, and if you don't have severe damage over long-term to your small intestine it might not show up -- which wouldn't mean you don't have it.

If your doctor does not know about these specific blood tests for celiac, I would suggest going to another one who does. This message board has loads of useful information, and there are also a few good books and websites out there if you want to do some research. Good luck.

Ellen

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Can anyone tell me how long have doctors been using the current blood tests to test for gluten sensitivity or celiac disease?

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I just read about this in a magazine, Parents I think, it had an article called the enemy in the kitchen, I think or maybe it was the Pantry? Any way, it sounded eerily familiar in a lot of ways. I will tell you some information about my family first:

I am in my thirties and always have had digestion problems, (irritable bowel/spastic colen, reflux also) My mother has diabeties and Thyroid, but most importantly my children:

My oldest is anemic if not on iron pills, and as a baby she was having lots of trouble gaining weight and reaching milestones. She is fine now that she is older except for being lactose sensitive. My middle child seems fine, never had a problem except it did take her awhile to switch from formula to milk...needed soy milk until 3yrs or she would have diarreha. My baby is not doing so well. At nine months old she can barely sit up and only weighs 14 lbs. 6 oz. She doesn't crawl but rolls good. She is behind in size and milestones, and suffers from major reflux.

Does any of this sound like enough reason to be tested for celiac disease or gluten intolerance?? Or am I just over reacting? What do you recommend?

Any one who reads this please respond. :rolleyes:

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Christina,

Oh, yes! Definitely have your children (and yourself) tested for celiac disease! If only one of your kids had trouble, it would still be worth it to investigate possible celiac disease, but since a whole cluster of family members has suspicious symptoms I (personally) think it's rather likely that celiac disease is the culprit.

It's great that articles like the one in Parents magazine are helping to raise awareness of celiac disease and prompting readers to pursue testing. I wish you and your family the best of luck during the diagnostic process!

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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