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To Test Or Not To Test

Chrissyb

By Chrissyb
in Coping with Celiac Disease

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Chrissyb Enthusiast
Chrissyb
Posted

I have not "officially" been dx with Celiac Disease but I have been gluten-free since Jan of this year. I have had stomach problems for many many years and had two endoscopys(sp). One doc told me I had IBS and the other told me I had gastorisist and both sent me on my way with no follow up just eat more fiber.

I saw an Allergy specialist in Jan and he did the sctrach test and I was positive for most all inhalants and a lot of foods. I was really confused on the blood work he did but he said it came back neg for celiac. But I know how my body feels I know better then he does so I went gluten free and have had good reslults and can really tell when I have had something with gluten in by accident. When this happens it take at least a week if not more for my body to get back to what is normal.

I also suffer with MS and have notice that with in the last year my teeth are breaking, I now have 4 broken teeth in my mouth. I am wondering if this a result of malabsortion.

I know I am rambling sorry I tend to that MS makes me have brain fog a lot. My question would be, do you think it would be worth it for me to find a doc in colorado who know about celiac and should I get tested. I have read that in order for it to be accurate I would have to eat wheat again I do not think I am welling to do that. I really do not what to be sick not when I am just beginning to feel I little bit better.

Any advice would be very welcome.

Chissy

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ShayFL Enthusiast
ShayFL
Posted

IF you can afford it, you might consider Enterolab as their results are supposed to be accurate even gluten-free (up to a year gluten-free). You can also get the genetic component of the test to see if you have Celiac genes. They also test for egg, dairy and soy.

Afraid blood/biopsy would be neg for you now due to how long you have been gluten-free. There is a chance your damage was so severe that it might still show up in biopsy. It is up to you if you want to put yourself through that for iffy results at best.

GFinDC Veteran
GFinDC
Posted

Hi Chrissy,

Personally I am not willing to go on gluten just to get a test result. My symptoms when I get glutened are pretty obvious to me though. I did get a positive on the gene test and Dr. Fassano said my symptoms were a match for celiac. The value of being tested is something you would need to think about and decide if it is important enough to you. It is not like you can't decide to do a gluten challenge some time later on and get tested, you are not locked out from doing it. Like I said, my symptoms are pretty clear to me when I get glutened though. I understand that is not the case for everyone and it can be confusing what symptoms are being caused by what condition. I have thyroiditis and I sometimes wonder if the thyroid is causing some symptoms or the celiac. If you have clear GI reactions to being glutened then I see no point in being tested really. If your body doesn't like the stuff then it is best to avoid it.

Ok, breaking teeth. You aren't chewing on nickles are you? :) Malabsorbtion seems like a good bet there. I am lactose intolerant so I take calcium pills every day to compensate for the lack of dairy in my diet. Maybe that would help you too.

Gerri Explorer
Gerri
Posted

Hi Everyone,

I had my biopsy September 4th. I was so sick. Since having the biopsy I am now off gluten for good. Two week after the biopsy my bloating in my stomach is just starting to go down.

My Arthritist (OT) said my hand grip is a little better, still not good, since being off the gluten.

Gastro took 3 or 4 samples, I was satated, and still felt her take the samples. One in my throat, one in my stomach, and rest from my small intestine.

She said she didn't think I am celiac, but gluten intolerant. She said she would not be certain until biopsies came back. It really doesn't matter to me I am not eating gluten anymore, I was so very sick preparing for the biopsy. I needed to have the biopsy also done because I wanted to know what was going in my throat and stomach. I will find out about everything October 19th. My stomach and throat, continues to hurt. The GERDs pain just doesn't want to go away. Everything I eating causes pain.

I had two other doctors during the preparation towards the gluten biopsy say they would had diagnosed me with celiac without the biopsy. Because of their statement I am classifying myself as celiac.

Hugs

Gerri

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Everyone,

I had my biopsy September 4th. I was so sick. Since having the biopsy I am now off gluten for good. Two week after the biopsy my bloating in my stomach is just starting to go down.

My Arthritist (OT) said my hand grip is a little better, still not good, since being off the gluten.

Gastro took 3 or 4 samples, I was satated, and still felt her take the samples. One in my throat, one in my stomach, and rest from my small intestine.

She said she didn't think I am celiac, but gluten intolerant. She said she would not be certain until biopsies came back. It really doesn't matter to me I am not eating gluten anymore, I was so very sick preparing for the biopsy. I needed to have the biopsy also done because I wanted to know what was going in my throat and stomach. I will find out about everything October 19th. My stomach and throat, continues to hurt. The GERDs pain just doesn't want to go away. Everything I eating causes pain.

I had two other doctors during the preparation towards the gluten biopsy say they would had diagnosed me with celiac without the biopsy. Because of their statement I am classifying myself as celiac.

Hugs

Gerri

Gerri, You have been through so much. I am glad it is over. Now you can heal and I hope it happens quickly for you.

DinaB Apprentice
DinaB
Posted
I have not "officially" been dx with Celiac Disease but I have been gluten-free since Jan of this year. I have had stomach problems for many many years and had two endoscopys(sp). One doc told me I had IBS and the other told me I had gastorisist and both sent me on my way with no follow up just eat more fiber.

I saw an Allergy specialist in Jan and he did the sctrach test and I was positive for most all inhalants and a lot of foods. I was really confused on the blood work he did but he said it came back neg for celiac. But I know how my body feels I know better then he does so I went gluten free and have had good reslults and can really tell when I have had something with gluten in by accident. When this happens it take at least a week if not more for my body to get back to what is normal.

I also suffer with MS and have notice that with in the last year my teeth are breaking, I now have 4 broken teeth in my mouth. I am wondering if this a result of malabsortion.

I know I am rambling sorry I tend to that MS makes me have brain fog a lot. My question would be, do you think it would be worth it for me to find a doc in colorado who know about celiac and should I get tested. I have read that in order for it to be accurate I would have to eat wheat again I do not think I am welling to do that. I really do not what to be sick not when I am just beginning to feel I little bit better.

Any advice would be very welcome.

Chissy

Hi Chrissy,

I am new to this site and have similar symptoms to you. I have not been diagnosed, but having been Gluten Free since August 2007, I can tell you that I am feeling so much better. It took some time to get it right, but I am almost there. The only problem I am having now is the gastritis and erosive esophagus. I was diagnosed in January 08 with that. I went in for endoscopy for Celiac and came out with something else. I asked my Dr if I would have to follow any special diet for the Gastritis and he said no. So, I kept eating the way I normally would, minus the gluten. However, with GERD, Gastritis, Heartburn, etc, you need to stay away from onions, garlic, beans, coffee, chocolate, stringy meats, peppermint, etc. When I have any of these foods, I get gassy and bloated almost immediately. I've been on various meds for it, and after 4-5 weeks they all stop working and I'm on to a new one. The only reason I think I am having problems is if Gluten is somehow slipping into my diet and messing me up. I will be fine, and then I am bloated and gassy for 1-2 weeks, and feeling sick. Then I'm fine again. So fed up with it and I am going for genetic testing at the end of October. My other choice was to be on gluten breakfast, lunch and dinner for 5 wks. If I did that I think I would wind up in the ER and would have enough gas to blow up the state of NJ...LOL. All kidding aside, maybe something in slipping in and causing you problems. Did you go for allergy testing through the blood?

Chrissyb Enthusiast
Chrissyb
Posted
  • Author

Dina - I had a IgG and IgA done in Jan and doc said the both were normal but this is the same allergy doc that told me that my allergy med would help with my wheat " allergy" :o Meds help if I am have an allergic reation like my ears itching, eye watering nose icky type stuff but not when it comes to my other problems duh. Not a smart doc when it come to celiac but he was not a gastro doc not sure he was good allergy doc now that I think of it but oh well. I just know that I feel better when I don't have gluten and that to me tells me something so I think I will listent to my body.

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DinaB Apprentice
DinaB
Posted
Dina - I had a IgG and IgA done in Jan and doc said the both were normal but this is the same allergy doc that told me that my allergy med would help with my wheat " allergy" :o Meds help if I am have an allergic reation like my ears itching, eye watering nose icky type stuff but not when it comes to my other problems duh. Not a smart doc when it come to celiac but he was not a gastro doc not sure he was good allergy doc now that I think of it but oh well. I just know that I feel better when I don't have gluten and that to me tells me something so I think I will listent to my body.

I know, I get so frustrated. One second I can eat something and I am fine. I eat too much of it and I am itchy all over. Do you know of any people who are Gluten Intolerant who CAN'T use what shampoos or hair products?

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    • trents
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      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      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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