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Can Anyone Help With Diagnosis?

sahmom4cj

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sahmom4cj Newbie
sahmom4cj
Posted

Hey I'm 30 and for the past 2 1/2 years have been having a lot of symptoms. Long story short....I did some research and it sounded like celiac. So I went to the dr asking if he could test for it and he told me it wasn't that but did the celiac panel along with a bunch of other invasive tests. Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

I feel like I'm being violated for unnecessary reasons. Is it wrong if I just go with the blood work and do the diet and if that solves my symptoms then I'm good? Do I REALLY HAVE to have the stomach biopsy if my number on the blood work was so high? Colonoscopy....really?

THANK YOU for any advice you may have,

Christina

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GFreeMO Proficient
GFreeMO
Posted

It is NOT wrong. It is YOUR body. You don't need a doctor to tell you what to eat or not eat.

Hornet Rookie
Hornet
Posted

I tend to have a more conservative approach. It's not a question of being wrong. It's a question of asking the MD why you need these tests, what will doing them tell you that is new or different and how they might change the outcome rather than just going on the diet. This is not a dx to fool around with. I am not a fan of any invasive tests, so I want reasons why they are medically necessary.

Just my 2 cents. I am at the beginning of figuring out my issues, but I will see a celiac specialist and listen to what they have to say before I decide how to proceed to help myself. Take deep breaths and try to lower your stress whenever you feel overwhelmed. Good luck.

robertwilburn35 Newbie
robertwilburn35
Posted

I agree that you should ask those why questions and will the test make a difference in treatment. Is the Dr concerened about results for some other reason than ciliac? I think to know the who,what, when why and where is prudent prior to deciding not to go through with the test. However I also agree that its your body your choice so if you dont like the answers or feel more comfortable with diet and waiting then if you have been informed its a good choice. Just make sure you are informed and ask the questions. by you stating that the dr said something about an ttg somthing is 100 says to me that you need to do a little more research and get more info.

nvsmom Community Regular
nvsmom
Posted

Celiac panel came back and one of my numbers (she said ttg something) is 100, while anything under 10 is normal. He ordered MORE blood work, nothing related to celiac and wants a colonoscopy and endoscopy.

IgA tTg is is what causes a cliac's body to attack itself when it is exposed to gluen; it's pretty specific to celiac. About 95% specific I believe, which means that out of 100 positive tTg test, about 95 would be celiac and the rest would be something else.

EMA is another test and it is virtually 100% specific to celiac... Did they test that too? I ask because I had a positive ttg and EMA so I don't feel the need for biopsy since the two blood tests which indicate intestinal damage came back positive. I'm willing to change my diet based on that. Is your doctor worried you won't adopt the diet based on those results?

Like the others said, I would talk with your doctor more. And best wishes to you. I hope you get answers and feel better soon.

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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

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      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
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