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Does My Bloodwork Say Celiac? I Feel Horrible. :(

FlourGirl23

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FlourGirl23 Newbie
FlourGirl23
Posted

Hi, everyone. I am a 32 year old female who has struggled with IBS (or I thought so) since I was 10 years old. It came and went sometimes but never truly went away (just lots of trips to the bathroom).

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

Then last year, I had more bloodwork done. I have a different doctor now. My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

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lizard00 Enthusiast
lizard00
Posted

Hi and welcome to the forum! :)

My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This looks like the test to see your total IgA serum, which basically is checking to see if you make enough or are deficient. Your number came back just within range, so you are technically not deficient, but you are on the very low side of normal. This could have affected the results of the tTG test, making it look negative.

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

WHAT AN IDIOT! :angry: (sorry.... couldn't contain myself.... :lol: )

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

Those are certainly symptoms of celiac, from the physical symptoms to the vitamin deficiencies. I hope you get somewhere with the doctor, as it does sound like you may be looking in the right place. Maybe this time around the doctor will be a little more up to date with current research. Keep us posted!

ang1e0251 Contributor
ang1e0251
Posted

Is there any special reason why you need a dr's diagnosis? If you don't get anywhere again, why not just go on the gluten free diet? You don't need a diagnosis to do it and it is healthy to try. Your doctors obviuosly have had years to treat you and have done nothing for you. Maybe it's time to take your diet in your own hands.

This is your own very personal desicion. If you want further testing, that is OK. Please keep us informed and continue to ask anything you wish.

homemaker Enthusiast
homemaker
Posted
Hi, everyone. I am a 32 year old female who has struggled with IBS (or I thought so) since I was 10 years old. It came and went sometimes but never truly went away (just lots of trips to the bathroom).

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

Then last year, I had more bloodwork done. I have a different doctor now. My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

I cannot believe that Doctor said "not skinny and Irish" Grrr That is so untrue....One can be normal weight or overweight and still have celiac. Also you don't have to be Irish... What Old School Thinking!

I also tested negative but went gluten free anyway...I had too strong of a family history, I did not want to take a chance.

I went Gluten Free 5 days ago...and I am feeling better every day!

FlourGirl23 Newbie
FlourGirl23
Posted
  • Author
Is there any special reason why you need a dr's diagnosis? If you don't get anywhere again, why not just go on the gluten free diet? You don't need a diagnosis to do it and it is healthy to try. Your doctors obviuosly have had years to treat you and have done nothing for you. Maybe it's time to take your diet in your own hands.

This is your own very personal desicion. If you want further testing, that is OK. Please keep us informed and continue to ask anything you wish.

I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means. Doctors seem to think my bloodwork doesn't count which is why I am asking here.

ravenwoodglass Mentor
ravenwoodglass
Posted
I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means. Doctors seem to think my bloodwork doesn't count which is why I am asking here.

Your deficiencies as well as the positive blood test make it very likely you are one of us. If you decide to go with an endoscopy keep eating gluten until that is done then immediately upon leaving the office go gluten free. Your body will likely give you your answer before you even get the test results. There are high rates of false negatives with both blood and biopsy so you should give the diet a good shot even if they are negative. The trade off for finding alternative foods for what you are now eating is well worth it for pain free energetic days and a much longer and healthier life. It is hard at first but the diet isn't as bad as a lot of doctors will make you think it is.

mushroom Proficient
mushroom
Posted
I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means.

Many people who are not diagnosed celiacs are gluten intolerant, to the same extent that those with celiac are, and suffer many/most of the same consequences if they continue to eat gluten.

It may be that the only way you can find out for sure if gluten is a problem for you is to discontinue eating it. If you felt better not eating gluten, surely you would continue not eating it??? The diagnosis is not the driver here, but what makes you feel better and stop harming yourself with gluten. So I agree you should give the diet a try no matter the diagnosis. And that would need to be for a good two-three months because sometimes it takes a while for the full benefits to start kicking in. I have no diagnosis myself but would never knowingly eat gluten again.

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txplowgirl Enthusiast
txplowgirl
Posted

Flourgirl,

I am or I should say I WAS 75 lbs overweight. I had your symptoms plus manny more. I have been in pain and just downright miserable since I was 7 years old. Dr's all told me it was IBS, and/or it's all in my head. Didn't conform to the dr's point of view for celiac. I also have fibromyalgia and rhuematoid arthritis.

I said to heck with them and went gluten free anyway. Best thing I ever done. My fibromyalgia, and Rheumatoid arthritis seems to have gone into remission. Have been gluten free since April. Stomach issues have gone away unless glutened, Anxiety and Depression have also gone away also unless glutened.

Best thing about this is a big bonus. I have lost 30 lbs without even trying. I think part of that though is due to being super sensitive to gluten free processed foods. They gluten me so I can't eat those. Also found out I had other food intolerances as well, You might have them also.

I was desperate to find something, anything to stop the pain and tummy issues. If you are at that point then going gluten free is a no brainer, in my opinion that is. I guarantee that 2 months from now you will be at that point of saying no gluten for me ever no matter what.

I hope you get to feeling better soon.

Vicky

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