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Confused

ycavaz

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ycavaz Rookie
ycavaz
Posted

Hi, I'm new and this is my first post. I've had hashimoto's for 11 yrs and I get more sick every year. So I decided to order the gluten sensitivity test from enterolab because of unresolved diarrhea for many years. Yesterday the results came back as positive for antigliadin antibodies with a level of 49.

I was told I have to maintain a permanent gluten free diet. Does that make me a celiac now? Should I see a gastroenterologist and have them confirm it or just accept it and do gluten-free forever? I'm really confused.

Yvette

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Tim-n-VA Contributor
Tim-n-VA
Posted

Do you want a diagnosis that the general mainstream medical community will recognize? If so, continue to consume gluten, see a GI and get the blood work and biopsy. If you don't care about that acceptance/recognition, try a gluten-free diet and see if you feel better.

GFinDC Veteran
GFinDC
Posted

Hi Yvette,

You said you are getting sicker every year right? One of the "nice" things about celiac is that you can make a big improvement in your health by going on the gluten-free diet. You can go to a gastroenterologist and have a biopsy done, or you can get blood testing for gluten antibodies. Or you can try the diet and see if it makes your symptoms improve. If you have digestive symptoms like D or c, or gas, bloating, pain and they get better on the diet, that is a pretty good sign you should avoid gluten. The gastro biopsy may not show any intestinal damage, but you could still be celiac and have damage to other parts of the body. So if you have other non-digestive symptoms that improve on the diet, that is a good thing too right?

There is some debate over the Enterolab testing. Dr. Fine says the antibodies to gluten show up in the stool before they show up in the blood. So it would basically be an earlier detection method than blood antibodie tests. If that is true then you might test negative on the blood and biopsy but still have the disease. It seems like the blood tests miss some cases of celiac from what I read on the site here. They aren't 100% reliable.

So, long story short, you need to decide if you want to try the diet or go for further testing. If you do go for the blood tests, you need to keep eating gluten in the meantime so the tests will have a chance to work.

ycavaz Rookie
ycavaz
Posted
  • Author

It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

maile Newbie
maile
Posted
It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

my husband is the same way, for that reason I did do the enterolab testing and for him it settled the matter, that and seeing my reaction to going gluten-free and then getting glutened during the holidays.

I did have a blood test (not sure which one, wasn't told at the time) and it was negative but that didn't surprise me as I have been gluten lite for years and had been gluten-free for 2 weeks prior.

There are some good articles on the main site about gluten sensitivity (the authors are various doctors) that you could print out and show those to your hubby, good luck, I understand how frustrating it can be with husbands (mine anyway) :rolleyes:

ycavaz Rookie
ycavaz
Posted
  • Author

I'll discuss it with him and print those articles and hopefully he will understand that I am not up to getting a celiac dxg and doc shopping. As it is I am seeing a rheumy on tues. due to other symptoms. I'm hopeful that going gluten free will help.

Mother of Jibril Enthusiast
Mother of Jibril
Posted
It would be for my husband and family, so they will take me seriously. I went gluten free yesterday, as soon as I found out but my husband is already telling me to see a doc.

He is one of those people who are disgustly healthy and doesn't understand chronic diseases nor my distrust of docs who bungled my hashi dx for 2 yrs. He trusts everything a doc says while I don't because of the things I've been told about my thyroid.

My husband is like that too... he is NEVER sick. We've been married for 12 years and I've only seen him sick maybe three or four times. He's on board with the GFCFMF diet... he always wanted me to eat more fruits and vegetables ;) ... but he doesn't understand anything about autoimmune disorders and he's not really willing to learn (which is a bit frustrating since he's not a stupid man).

Anyway... I also went gluten-free after I was diagnosed with Hashimoto's. For the first time since I hit puberty my health is improving and I feel like I have some control over my body!! :) I'm still taking thyroid hormones, but I no longer have any of the symptoms of hypothyroidism. I've lost about 30 pounds and my skin looks great :lol: Most importantly, I'm no longer in pain and my bloodwork (CBC, CMP) is totally back to normal.

Gluten can definitely affect more than just your intestines, which is the definition of celiac disease. But... testing for antibodies is still pretty unreliable (lots of false negatives). A positive response to the gluten-free diet is a much better diagnostic tool. Whether gluten is destroying your intestines, thyroid, liver, brain, joints, etc... the cure is the same. Stay off gluten 100%. Since I figured out that I'm also intolerant to corn I've cut 99% of processed foods out of my diet. I've been really, REALLY strict for the last couple of months and it's definitely paying off.

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ycavaz Rookie
ycavaz
Posted
  • Author
My husband is like that too... he is NEVER sick. We've been married for 12 years and I've only seen him sick maybe three or four times. He's on board with the GFCFMF diet... he always wanted me to eat more fruits and vegetables ... but he doesn't understand anything about autoimmune disorders and he's not really willing to learn (which is a bit frustrating since he's not a stupid man).

My husband is exactly the same way. We fight about my illness but he refuses to read anything about it. This May makes 12 yrs for us and I can remember only 3 times he has been sick. Sometimes I envy him.

sbj Rookie
sbj
Posted
I'll discuss it with him and print those articles and hopefully he will understand that I am not up to getting a celiac dxg and doc shopping. As it is I am seeing a rheumy on tues. due to other symptoms. I'm hopeful that going gluten free will help.

Hi ycavaz:

You don't need a diagnosis of celiac to go on a gluten free diet. However, do you think you have celiac disease? If you have cleiac disease then you should do more than just go on a gluten free diet. I read that advice here a lot - "try the gluten free diet, it can't hurt" - but when you are initially diagnosed with celiac disease you do more than just change your diet. Typically you get a complete blood count. Your doctor checks for mineral, vitamin, and other nutritional deficiencies. You consult with your doctor about any other symptoms you might have that could potentially indicate other auto-immune conditions. If you have suffered with celiac disease for a long time, as it seems you have, you may have intestinal damage - that damage could lead to cancer. A GI might want to take a look for signs of such damage. You should also get a bone density scan to look for osteopenia or osteoporosis.

A gluten free diet won't hurt you, and no one here will say that you must get a celiac diagnosis. But when you are initially diagnosed with celiac disease you should do more than just change your diet. You might have intestinal damage or nutritional deficiencies or low bone density right now and those conditions might need to be treated right now.

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