What Should I Do?

[katinagj]

After a year of trying to get diagnosed with SOMETHING I've finally figured out that I actually do have some sort of intolerance to wheat. Other gluten foods, I'm not sure yet. Here's the story: starting in 8th grade I started having stomach issues, we(me and my parents) always thought it was dairy causing the problem, so I sort of avoided it in high school, and later figured out that dairy doesn't always affect me. A year ago after having severe bone aches, stomach issues getting worse, and very irregular always strange looking BMs(as well as being very fatigued and sore) I asked my doctor to test for celiac, even though as far as we know no one in my family has it, but we don't know a ton about family medical history so who knows. She said she wanted to do some other testing first before getting to the serious stuff. All blood tests came back normal except for a vit d deficiency which I am still taking supplements for because without supplements it wont stay at a normal level. I have gone to the doctor about 8 times since then, and still no celiac testing(though I sort of forgot about it being a possibility until now). Last week I went on an elimination diet to figure out allergies, which included going gluten free and dairy free. I cheated by eating a peice of toast, because I was starving and haven't quite got the hang of this diet yet. This was at about 8 pm, by the time I went to bed at 11 I had a severe headache, then woke up at 2:30 AM with such severe abdominal pain that I thought my husband was going to have to take me to the hospital. It got to the point of nausea, and I had to run to the bathroom twice to puke up toast(and it did still look like a big hunk of toast(sorry for the visual). The nausea and stomach ache stuck around for another hour while I sat on the couch sipping peppermint tea hoping I could go back to bed soon. Now I've just read that going gluten free before getting tested can affect diagnosis! I wish I had known this before...what should I do? I'm afraid to eat anything that could have gluten in it, since I am unsure if I got sick over gluten or if it was just the wheat...

ANY advice is helpful

ETA: I forgot to mention that after going onto this elimination diet I almost immediately felt better. My body aches stopped as well as stomach aches and strange bowels until I cheated on that piece of toast.

I also forgot to mention that we are trying to concieve and I had two early miscarriages in a row in september and october, that were completely unexplained. While I know that one early miscarriage is farely common, having two just worries me, and I don't want it to happen again, for obvious reasons. We have now hit our one year mark since we first started trying.

[mushroom]

  On 2/8/2010 at 6:59 PM, katinagj said:

After a year of trying to get diagnosed with SOMETHING I've finally figured out that I actually do have some sort of intolerance to wheat. Other gluten foods, I'm not sure yet. Here's the story: starting in 8th grade I started having stomach issues, we(me and my parents) always thought it was dairy causing the problem, so I sort of avoided it in high school, and later figured out that dairy doesn't always affect me. A year ago after having severe bone aches, stomach issues getting worse, and very irregular always strange looking BMs(as well as being very fatigued and sore) I asked my doctor to test for celiac, even though as far as we know no one in my family has it, but we don't know a ton about family medical history so who knows. She said she wanted to do some other testing first before getting to the serious stuff. All blood tests came back normal except for a vit d deficiency which I am still taking supplements for because without supplements it wont stay at a normal level. I have gone to the doctor about 8 times since then, and still no celiac testing(though I sort of forgot about it being a possibility until now). Last week I went on an elimination diet to figure out allergies, which included going gluten free and dairy free. I cheated by eating a peice of toast, because I was starving and haven't quite got the hang of this diet yet. This was at about 8 pm, by the time I went to bed at 11 I had a severe headache, then woke up at 2:30 AM with such severe abdominal pain that I thought my husband was going to have to take me to the hospital. It got to the point of nausea, and I had to run to the bathroom twice to puke up toast(and it did still look like a big hunk of toast(sorry for the visual). The nausea and stomach ache stuck around for another hour while I sat on the couch sipping peppermint tea hoping I could go back to bed soon. Now I've just read that going gluten free before getting tested can affect diagnosis! I wish I had known this before...what should I do? I'm afraid to eat anything that could have gluten in it, since I am unsure if I got sick over gluten or if it was just the wheat...

ANY advice is helpful

ETA: I forgot to mention that after going onto this elimination diet I almost immediately felt better. My body aches stopped as well as stomach aches and strange bowels until I cheated on that piece of toast.

Hi, Katinagj, and welcome to the forum.

It sounds to me like you are a pretty good diagnostician yourself. As far back as a year ago you had your suspicions, and your doctor should have listened to you, particularly when you tested with a Vitamin D deficiency--a very large percentage of us have this symptom because our small intestines are damaged and we are not properly absorbing the nutrients in our food. By now, you probably have other deficiencies as well, and she should have known it could be associated with celiac with your other presenting symptoms.

If you have problems eating wheat, it is most likely (although not exclusively) a problem with gluten. And as you are aware you do need to be eating gluten for a proper test result. If you have been gluten free for only a week it is probably still not too late to get tested accurately. Two weeks would be too long. Can you call your doctor or her nurse or PA right away, tell her what has happened and ask her to order the testing (again!) right now, because you don't want to have to go back on gluten in order to be tested. By the way, it is common after a period free from gluten to have a more violent reaction to it when it is resumed. It's like your body has said, Ah, thank goodness we got rid of that stuff, and then when faced with it again, Oh No, Not Again! Two words of warning about testing:

1. If the bloodwork is positive she will probably want to order an upper GI endoscopy with biopsy (and you still have to eating gluten for that), and

2. It is possible that the test will come back negative--either a false negative, which seems to happen about 20% of the time, or because you are a non-celiac gluten intolerant, a condition some doctors are not even aware of, but which is just as bad for you as being celiac, and requires the same treatment--a gluten free diet.

Now, you do not have to do the endoscopy if you choose not to because it would probably take a while to schedule it depending on where you are and you would have to resume eating considerable amounts of gluten, or you could do the endoscopy without the gluten just to rule out any other condition. But I would think the way you have responded to the diet will have probably convinced you that you should not eat gluten again, whichever way the ball bounces.

That's my take on your situation. Good luck with making your choices.

[katinagj]

  On 2/8/2010 at 7:28 PM, mushroom said:

Hi, Katinagj, and welcome to the forum.

It sounds to me like you are a pretty good diagnostician yourself. As far back as a year ago you had your suspicions, and your doctor should have listened to you, particularly when you tested with a Vitamin D deficiency--a very large percentage of us have this symptom because our small intestines are damaged and we are not properly absorbing the nutrients in our food. By now, you probably have other deficiencies as well, and she should have known it could be associated with celiac with your other presenting symptoms.

If you have problems eating wheat, it is most likely (although not exclusively) a problem with gluten. And as you are aware you do need to be eating gluten for a proper test result. If you have been gluten free for only a week it is probably still not too late to get tested accurately. Two weeks would be too long. Can you call your doctor or her nurse or PA right away, tell her what has happened and ask her to order the testing (again!) right now, because you don't want to have to go back on gluten in order to be tested. By the way, it is common after a period free from gluten to have a more violent reaction to it when it is resumed. It's like your body has said, Ah, thank goodness we got rid of that stuff, and then when faced with it again, Oh No, Not Again! Two words of warning about testing:

1. If the bloodwork is positive she will probably want to order an upper GI endoscopy with biopsy (and you still have to eating gluten for that), and

2. It is possible that the test will come back negative--either a false negative, which seems to happen about 20% of the time, or because you are a non-celiac gluten intolerant, a condition some doctors are not even aware of, but which is just as bad for you as being celiac, and requires the same treatment--a gluten free diet.

Now, you do not have to do the endoscopy if you choose not to because it would probably take a while to schedule it depending on where you are and you would have to resume eating considerable amounts of gluten, or you could do the endoscopy without the gluten just to rule out any other condition. But I would think the way you have responded to the diet will have probably convinced you that you should not eat gluten again, whichever way the ball bounces.

That's my take on your situation. Good luck with making your choices.

Thank you so much for the information! I read it and called my doctors office immediately, I am now waiting for a call back from my doctor. I was lucky I didn't end up on hold for 20 minutes. Luckily the last time I was in I went in through the walk in clinic and went to a different doctor than my original primary and the respresentative on the phone sent the order to him to okay. He seemed to listen a lot better than the other doctors I've gone to so I am hopeful that he will actually okay it.

For some odd reason I was so nervous on the phone I could barely explain myself. How embarrassing. lol. My nerves like to act up when I least expect it. :/

[katinagj]

Alright, so got my call back, and they set an appointment for me with my dr tomorrow. Luckily I am getting to see the same doctor I was seeing during my miscarriages, and I actually liked her and felt that she listened to me better. Now I need help figuring out what I should bring with me to convince her that I do in fact need to be tested, because they want me to talk over my symptoms with the doctor first. I am soo nervous now, I'm afraid they will decide not to test, since I've had drs deny me certain tests I asked for so many times in the past. And all I want is an answer...

So besides a list of my symptoms. Is there anything else I should bring with me?

[GFinDC]

You could also bring your family medical history on both sides, aunts, uncles etc... Celiac is an autoimmune disease, and they tend to run in families. So a history of autoimmune diseases in the family might persuade the doctor. If you google "celiac related condition" or "celiac associated condition", you will find lists of other autoimmune diseases that people with celiac sometimes have/get.

[mushroom]

You could also take along a list of some of the common symptoms of celiac disease (many doctors are not that familiar with them), like the list found here: https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

You might even have of these additional symptoms without being aware of it. I would help to highlight the symptoms you do have--make it easy for her.

Good luck!

[katinagj]

Thank you so much for the help! I had an appointment with a dr that I have been trying to switch to my primary for quite some time. She was finally taking new patients. I brought in my list of symptoms and printed out and highlighted the symptoms I had from those pages including highlighting some of the responses that went along with my symptoms. She listened to me, and we talked over the symptoms, and she thought I had good reason to think I might have celiac disease. She also stated the possibility of lactose intolerance or IBD, but I got my blood taken just for the celiac test. When the blood results come in she is going to send me to a specialist(even if the test is negative). I am so happy that something is finally getting done, and that I may have an answer soon. Whether or not I will go back on gluten to do the endoscopy so that I could have a real diagnosis, I'm not sure. I'd like to have a diagnosis for when we have kids in case they had it, so it would be easier to get the dr to test them, but at the same time. I don't think I could handle eating wheat ever again after my severe reaction over the weekend....I guess we will see how things go! Oh my dr also thinks I have ADD, which I have also suspected for years, lol. But not worried about that one since I refuse to go on any of that medication.

Anyways, thanks again for the help, it is really appreciated!