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Missy1227

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Missy1227 Newbie
Missy1227
Posted

I finally decided to ask the doctor what might be causing me to have severe diarrhea and stomach pains that wake me up at night. It doesn't happen all the time a couple of times a month some more sever than others. The most sever attack I have had I woke up with sever stomach pains that felt like my insides were on fire, watery diarrhea, hives, vomiting and finally I passed out. These same symptoms have happend 3 times in the last 5 years. The other times I have not had the hives or passed out but have had the other same symptoms. So when I finally told him all of this he tested me for Celiac. He told me to look up other peoples symptoms and stories of Celiac and compaire them to mine. I have to say it was the first time I felt like there was a reason for all my problems and maybe a diet change would cure me of it. I'm not one to run to the doctor for anything but it's getting to the point I worry everytime my stomach starts to grumble and that is all the time! So my test came back negative so I let them know that I was more worried now than I was before since he had me do some research. I came across the term nocternal diarrhea and it says that it should be investigated. It will show up Celiac disease for nocturnal diarrhea and with my other symptoms it is a perfect match. I've been refered to a GI doctor and go on the 8th of June. I'm anxious and really hope for some answeres. I've felt so alone with everything until I started to read some of the stories on here.

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beachbirdie Contributor
beachbirdie
Posted

I finally decided to ask the doctor what might be causing me to have severe diarrhea and stomach pains that wake me up at night. It doesn't happen all the time a couple of times a month some more sever than others. The most sever attack I have had I woke up with sever stomach pains that felt like my insides were on fire, watery diarrhea, hives, vomiting and finally I passed out. These same symptoms have happend 3 times in the last 5 years. The other times I have not had the hives or passed out but have had the other same symptoms. So when I finally told him all of this he tested me for Celiac. He told me to look up other peoples symptoms and stories of Celiac and compaire them to mine. I have to say it was the first time I felt like there was a reason for all my problems and maybe a diet change would cure me of it. I'm not one to run to the doctor for anything but it's getting to the point I worry everytime my stomach starts to grumble and that is all the time! So my test came back negative so I let them know that I was more worried now than I was before since he had me do some research. I came across the term nocternal diarrhea and it says that it should be investigated. It will show up Celiac disease for nocturnal diarrhea and with my other symptoms it is a perfect match. I've been refered to a GI doctor and go on the 8th of June. I'm anxious and really hope for some answeres. I've felt so alone with everything until I started to read some of the stories on here.

Hi Missy, welcome to the forum!

Do you by chance have the names of the tests your doctor did? It would be really helpful to have you list them, and what the results were. Sometimes doctors don't do a complete panel, and without knowing that you wouldn't automatically want to assume you are completely negative for celiac.

Of course there can be some other things going on as well, so stick around and report on your progress. You'll find lots of wonderful, knowledgeable, and supportive people here!

MitziG Enthusiast
MitziG
Posted

Yes, definitely get a copy of your labs and post them on here. I would say 90% of doctors don't do a full panel, and if so, celiac can easily be missed.

However, even a full panel only catches 70% of celiac disease.

The next step would be an endoscopy, with the doctor taking a minimum of 8-16 biopsies. Many take only 1 or 2, and easily miss damaged areas.

After that, just go gluten free for a few months at least. Non-celiac gluten intolerance cannot be tested for and will cause the same symptoms as celiac disease.

Missy1227 Newbie
Missy1227
Posted
  • Author

I will try to get the test results this Friday from the GI. My family doctor is the one who ran the blood work and is referring me on so I'm sure they are forwarding my bloodwork as well.

beachbirdie Contributor
beachbirdie
Posted

I will try to get the test results this Friday from the GI. My family doctor is the one who ran the blood work and is referring me on so I'm sure they are forwarding my bloodwork as well.

That will be a great start. At least you are going to see a doc who is (hopefully!) more knowledgeable about digestive issues.

Keep on eating a gluten diet until you are completely through the diagnostic process! You need to be eating it in order for testing to be accurate!

  • 3 weeks later...
Missy1227 Newbie
Missy1227
Posted
  • Author

I didn't get the exact labs that they did on me because when I asked him about it he said that my doctor did the right ones I'm not really good at pushing it so I left it alone. I've had an endoscope and colonascopy as of Friday. He did take biopsy's but I think only 4. I didn't get to talk to the doctor and he had me schedule my follow up with my family doctor. Not sure why not with him. I can't say I really like him. Right after he had me go to the hospital to have blood drawn to check my C1Q esterae levels. I've never heard of it! Also he put in my report that I had multiple stomach palyps. I hate that he left me hanging! So now I wait for the biopsy's to come back. I have a feeling I'm going to be left with no answeres.

Katie C. Newbie
Katie C.
Posted

My daughter's blood test was negative for celiac, and so she suffered for a few more months before they did the endoscopy and colonoscopy and took biopsies. I found out later that the blood test is only a screening, and is not definitive. Her biopsies came back positive for celiac disease and she has been gluten free since. It has been surprisingly easy for her to eat gluten free. However, we have run across hidden gluten, so learn all you can in order to avoid as much hidden gluten as possible. Good luck! Looking forward to hearing your biopsy results.

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Katie C. Newbie
Katie C.
Posted

By the way, forgot to mention my daughter's symptoms were: severe pain, "volcano" stomach (rumbling and over-active), bad gas and bloating not helped by Gas-X, terrible constipation, sudden loud & painful burps, and intense nausea. Some of her symptoms are not "classic", so I think that threw the gastro specialist off. But you never know until the biopsies come back. The gastro was surprised.

  • 2 weeks later...
Missy1227 Newbie
Missy1227
Posted
  • Author

I still don't have my biopsy results but I do go in Friday. I'm updating because I went to the doctor for a sinus infection and found out my thyroid was enlarged. I've had blood work and an ultrasound and have found out that I have Hashimoto's disease. I have read that a gluten free diet can help the symptoms of Hashimoto's so without a doubt I will be going gluten free to see. I'm waiting until after my appointment with my gastroenterologist. I've also been refered to an Endocrinologist so we will see what that brings.

ravenwoodglass Mentor
ravenwoodglass
Posted

I still don't have my biopsy results but I do go in Friday. I'm updating because I went to the doctor for a sinus infection and found out my thyroid was enlarged. I've had blood work and an ultrasound and have found out that I have Hashimoto's disease. I have read that a gluten free diet can help the symptoms of Hashimoto's so without a doubt I will be going gluten free to see. I'm waiting until after my appointment with my gastroenterologist. I've also been refered to an Endocrinologist so we will see what that brings.

You have had the endo and the blood work. You don't have to wait for the results to get on the diet. Since false negatives with both are high you need to try the diet no matter what the results.

Missy1227 Newbie
Missy1227
Posted
  • Author

Thank you, I do realize that. Now that I'm seeing more of a reason to try gluten free before even knowing my results I'm giving myself some time to work up to it. I know it is a BIG change to make. I'm going to do some research so I know what is okay to eat and what to stay away from. We are a very busy on the go family so I have a lot of work ahead of me.

Missy1227 Newbie
Missy1227
Posted
  • Author

I still don't have my biopsy results but I do go in Friday. I'm updating because I went to the doctor for a sinus infection and found out my thyroid was enlarged. I've had blood work and an ultrasound and have found out that I have Hashimoto's disease. I have read that a gluten free diet can help the symptoms of Hashimoto's so without a doubt I will be going gluten free to see. I'm waiting until after my appointment with my gastroenterologist. I've also been refered to an Endocrinologist so we will see what that brings.

beachbirdie Contributor
beachbirdie
Posted

I didn't get the exact labs that they did on me because when I asked him about it he said that my doctor did the right ones I'm not really good at pushing it so I left it alone. I've had an endoscope and colonascopy as of Friday. He did take biopsy's but I think only 4. I didn't get to talk to the doctor and he had me schedule my follow up with my family doctor. Not sure why not with him. I can't say I really like him. Right after he had me go to the hospital to have blood drawn to check my C1Q esterae levels. I've never heard of it! Also he put in my report that I had multiple stomach palyps. I hate that he left me hanging! So now I wait for the biopsy's to come back. I have a feeling I'm going to be left with no answeres.

I think it would be a good idea to go ahead and be "pushy" on this point. There is a difference between "assertiveness" and "pushiness". You simply need to be assertive. Your health is at stake.

Tell the doc (or the nurse) or write a letter asking for copies of your reports, simply tell them that you are building a personal medical file so that if you move or travel you will have your records at hand. You do have a legal right to this information.

Even if the doc said they did the "right" tests, what is "right" in his eyes? For some docs the "right" tests are incomplete! B)

Missy1227 Newbie
Missy1227
Posted
  • Author

Good point. I'll ask Friday at my appointment. Now that I know I have Hashimoto's everywhere I read about it it says there is a big chance at having celiac or an intolerance to glutin and it's funny that my doctor looked into celiac first.

Missy1227 Newbie
Missy1227
Posted
  • Author

Okay no appointment because my biopsy's still are not back :(. So I asked for copies of the blood work. Here they are:

TTG Antibody,IGA. <3

Immunoglobulin A. 295

Gliding (deamidated AB (IGA). 7

This is all I have.

Missy1227 Newbie
Missy1227
Posted
  • Author

My gastro doctor just called me and said all the biopsy's came back normal as I expected. He says he can't treat me further until I get my thyroid straightened out. I couldn't get into the Endo until September but he is going to expedite and beg and plead if he has to! I am so happy about that!!! As of now celiac is a no but gluten free here I come to see how it does for me!!! I'm keeping my fingers crossed.

Does anyone have any comments on the bloodwork they did on me?

beachbirdie Contributor
beachbirdie
Posted

Okay no appointment because my biopsy's still are not back :(. So I asked for copies of the blood work. Here they are:

TTG Antibody,IGA. <3

Immunoglobulin A. 295

Gliding (deamidated AB (IGA). 7

This is all I have.

Do you have the reference ranges? Kind of hard to interpret without a "boundary line"!

Missy1227 Newbie
Missy1227
Posted
  • Author

TTG antibody, IGA <3. Reference : <5 negative, 5-8 equivocal, >8 positive

Immunoglobulin 295. Reference: 81-463

Gliadin (deamidated) AB (IGA). 7. Reference. <20 negative

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