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So Frustrated With Doctors, Tests, And Food!

elless

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elless Rookie
elless
Posted

I just got my test results back for celiac, if you can call it that. I literally had to bug my doctor for the results. Anyway, I called yesterday and they tell me its a negative. I had a lactose test today, also negative by the way even though milk gives me the worst gas and D. So I go to pick up copys of the tests. He only ran 1 test. The Tissue Transglutaminase AB, IGA. I got a 1 in a range of 0-4. When I took the test I was on a low gluten diet. My doctor insisted I didn't have to be eating it. I was only gluten free for maybe 2 weeks tops. And then ate it once every 3 to 4 days.

Since the blood tests almost 3 weeks ago I've been eating 2-3 servings of gluten products everyday. And I've been so sick. I have an endoscopy scheduled for 2 weeks and a colonoscopy schedule in 3 weeks, roughly. I know somethings up, and I know gluten gives me issues. My primary is convinced its in my head and keeps trying to send me to therapy.

What is the chance the celiac test was wrong? They are going to do a biopsy during the endoscopy. And could I still be having issues with dairy even though the lactose breath test came back negative? Ugg I just want answers already. Its been too long, and my primary doctor just looks at me like I'm a hypocondriac. He thinks I'm depressed and that's why I get terrible stomach aches, cramping D/C and all the other problems!!!

:/ Thanks for letting me vent.

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BlessedMommy Rising Star
BlessedMommy
Posted

Chances are very high that it was a false negative if you were gluten light during testing.

 

Hang in there, maybe the endoscopy will give you some more answers.

elless Rookie
elless
Posted
  • Author

Thanks :/ I'm just really annoyed with my primary. I have hypothyroid which I'm on synthroid for. Just test a positive on my ANA tests which he blew off and said they mean nothing. I have 3 aunts (moms sisters) dx with Lupus, 1 aunt dx with hashimotos. Thyroid conditions on both sides of family. A mile long list of symptoms all related to celiac, plus improvment gluten-free. And my mom has similar symptoms, although never diagnosed. He did sent me to a GI, who has been great. But he was also saying your probably stressed or depressed. And refered me to his wife, a therapist. Lmao. I just feel like he obviously is clueless on this. 2 years of symptoms and he thinks I'm depressed. :(

1desperateladysaved Proficient
1desperateladysaved
Posted

I have a wonder, perhaps someone could answer it.  Well, they didn't test my breath for dairy at the GI doctor, because I wasn't eating it for a long time.  So, were you eating dairy, and DOES IT MATTER?

 

Dee

elless Rookie
elless
Posted
  • Author

No I wasn't. Except for the 12 ounces of whole milk I had to drink this morning. I was wondering the same.

C-Girl Contributor
C-Girl
Posted

I just got my test results back for celiac, if you can call it that. I literally had to bug my doctor for the results. Anyway, I called yesterday and they tell me its a negative. I had a lactose test today, also negative by the way even though milk gives me the worst gas and D. So I go to pick up copys of the tests. He only ran 1 test. The Tissue Transglutaminase AB, IGA. I got a 1 in a range of 0-4. When I took the test I was on a low gluten diet. My doctor insisted I didn't have to be eating it. I was only gluten free for maybe 2 weeks tops. And then ate it once every 3 to 4 days.

Since the blood tests almost 3 weeks ago I've been eating 2-3 servings of gluten products everyday. And I've been so sick. I have an endoscopy scheduled for 2 weeks and a colonoscopy schedule in 3 weeks, roughly. I know somethings up, and I know gluten gives me issues. My primary is convinced its in my head and keeps trying to send me to therapy.

What is the chance the celiac test was wrong? They are going to do a biopsy during the endoscopy. And could I still be having issues with dairy even though the lactose breath test came back negative? Ugg I just want answers already. Its been too long, and my primary doctor just looks at me like I'm a hypocondriac. He thinks I'm depressed and that's why I get terrible stomach aches, cramping D/C and all the other problems!!!

:/ Thanks for letting me vent.

 

Doctors can be so frustrating! I would seek out another primary care doctor, maybe a woman because clearly this guy is not taking you seriously. Of course you're going to be depressed! You feel like garbage! As I and many others here can attest, when your intestines are unhappy, you're unhappy. It's very hard to feel good with all of that going on.

 

Hang in there - I can attest that it is worth it going through the rigamarole to find out what's going on. Keep your chin up and definitely vent here and to anyone who will listen - and dump that dopey doctor!

Jayson Newbie
Jayson
Posted

Unfortunately most doctors aren't informed on testing for celiac disease. I was sick for 10 years and gluten was never once mentioned as a possible. When my friend told me to do a gluten free diet I started feeling a little better so I wanted to get tested to confirm it. I took the test and it came back negative so I started eating gluten again and I went right back to collapsing and not being able to get out of bed. Turns out the test don't work if your already on a diet and when I found this out from the mayo clinic website the doctor I was seeing insisted that I was wrong. Repeating the test that he refused to do confirmed that he didn't know what he was talking about.

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cyclinglady Grand Master
cyclinglady
Posted

You could have a mild milk allergy. Any skin or sinus issues besides intestinal, when you consume dairy?

elless Rookie
elless
Posted
  • Author

You could have a mild milk allergy. Any skin or sinus issues besides intestinal, when you consume dairy?

 

No skin or sinus issues related to dairy that I know about.  I do get this red rash that shows up randomly for about an hour or two and then goes away.  Its almost always on my neck and chest.  But I don't know if that's related to anything.  I can handle a small amount of dairy, like a little bit of cheese.  But any large amount gives me bad D and gas.  My mom is the same way.  She just started having issues with dairy maybe 2 years ago.  She never took a breath test though. 

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