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Best way to present concerns to doctor and ask to be tested? DH? NCGS? celiac disease?

AnnieRoa

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AnnieRoa Newbie
AnnieRoa
Posted

I'm almost 35 and basically only go to the doctor if I have a bacterial infection. I feel like when I bring up something about my body that I feel is out of the ordinary - I'm dismissed, so I don't usually push. That's getting old and no longer working for me as all my symptoms are getting worse and beginning to seem connected. Interested in any insight from those who have been there.

 

About a decade ago I broke out in an itchy rash along my hairline, on my elbows, on my hips and my belly button. I went to a dermatologist who was fresh out of school and he biopsied an area for Celiac Disease and it came back negative. I recall him cutting out the actual bump and recently reading that is not the proper way to test?.. that you test skin next to the rash. Since that time I have had rashes breaking out on my hips regularly that result in a discoloration in pigment when the rash is at a clear point in the cycle. My elbows have gotten worse in the past couple years. I haven't experienced it along my hairline or my belly button since that first time. The rash itches and I pretty much scratch them open before I can see any fluid. (a few years prior I had a more minor breakout just on my hips and a doctor suspected shingles, my mom told me that a doctor suspected shingles when I was an infant as well at one point)... now I'm thinking that was wrong.

 

Unexplained infertility & recurrent miscarriage & failure to thrive in kids:

Right before the rash appeared, I went on Weight Watchers and since carbs are so many points, I avoided them. I did this for a year until I got pregnant and my nausea and indigestion were so bad that the only thing I thought comforted me were carbs. We saw a strong heartbeat at 9 weeks. We went back at 12 weeks and I there was no heartbeat. I had a missed miscarriage. I would not get pregnant again for 2 more years, despite trying. I saw a fertility doctor who wanted to check my tubes but I ended up getting pregnant with our son (now 5). My doctor knew I had a history of my progesterone fluctuating with the missed miscarriage and put me on vaginal suppositories of progesterone the first 12 weeks. My son was born 5 days overdue, induced and 6 lbs. 12 oz... he has been 5th percentile since he started solids. When my son turned one I had been eating healthy again and exercising and got pregnant but it was an ectopic pregnancy which ruptured/emergency surgery. I recovered and got pregnant again. My doctor didn't feel I needed progesterone but my levels dropped again and I had another D&C from the heart stopping. I was going to insist progesterone in the future. Several months later I got pregnant again with our daughter (now 2)... She is 10th percentile and declining some. She has had terrible gas from birth and rarely a solid stool. She has developed pretty bad eczema in the last year. I was so busy feeling emotional and obsessed with having children and all that does to your body allowed me to make excuses for my symptoms. Now, I'm coming out of a fog thinking a lot of this is connected.

 

My bloodwork & family history:

I just got hormone testing done thru my OBGYN and I'm low on thyroid and testosterone and vitamin D, she mentioned being low on iodine too - I'm not sure what all they tested for or didn't test for. I just selected a new PCP that I will be making an appointment with to do the celiac panel. My dad and his mom and aunt had a history of undiagnosed food allergies. They had terrible rashes and other issues and were afraid of the doctor. My dad loves food so much that he said he'd rather die early than give up things like pie. He had an allergy panel ran on his back and it came back positive for practically everything. You can touch his skin and there will be a rash moments later. He is constantly broken out and scratching his trunk of his body.

 

I'm starting to get proactive about this more because of my children. If they're not just petite but malnourished from an undiagnosed disease, then that's on me! My other symptoms have been migraines, bloating, extreme gas (burping and farting), night sweats, overactive bladder, unquenchable thirst at times, extreme fatigue, achy and weak body and tight hips. I seem to be fluctuating lately between constipation and diarrhea - I used to be more regular.

 

I'm just nervous that doctors are dismissive of people walking in thinking they have something. I'm really bad at being assertive. Of course, I don't want this diagnoses - it would make life harder but if it leads to a path of feeling better and my kids thriving, then I want to know ASAP. 

 

I should have been better about taking pictures but this is what I currently have on my phone of my elbows.

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tessa25 Rising Star
tessa25
Posted

When you have the rash call the dermatologist office and tell them you want to schedule an appointment to get a rash biopsied for dermatitis herpetiformis. Making a doctors appointment for a specific thing has always worked for me.

If you want to do the blood test for celiac disease then call a gastroenterologist office and tell them you want to make an appointment to get the full celiac panel done. Then in the office appointment hand them a piece of paper with a list of tests you want done.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten every day for 12 weeks for the tests to be valid.

If that doesn't pan out and you are in United States you can always order your own blood tests. But insurance won't cover the cost of the tests and and the full panel costs $298.

Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

 

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