Partially Tested, Still Skeptical

[fletcher96]

Beginning a few months ago, I thought I was just gluten intolerant. Then I started to really question what was wrong with me. Since I was a baby, I had intolerance to dairy. They would make us drink milk at school, and they (the government, basically) told us it was essential to our health. Yet, I was always in the health room after lunch in pain. Everyone thought I was faking it because I didn't like being at school. It wasn't until I entered high school that I diagnosed myself as lactose intolerant. I never had those stomach aches, gas, etc. again as long as I didn't consume dairy. Since I was 20, I lost a lot of weight. My BMI is 19.0, but it was 18.2 when it first happened. To maintain my weight, I don't exercise, and I overeat. This is not how things are supposed to be! I miss working out! I don't like worrying about eating when I don't want to. I'm pale, I'm cold, I can't sleep because I get a pins-and-needles feeling all over my body, sometimes I'll lose feeling in a toe, I've been told I look unhealthy, or like a ghost, I have no energy anymore, my anxiety, anger, and other mood issues are through the roof. I developed borderline personality disorder (ironically, probably, and partially stems from the emotional neglect of my parents about my physical and mental health for all those years. Saying it's all in my head, etc. I actually cried 3 times today, first time in months. My mom doesn't believe anythings wrong with me. I stayed up all night interpreting my DNA results to try getting her to believe me. We've been fighting all day. She always tries to minimize my problems and calls me a bypochondriac). My hair is becoming finer and possibly even thinning. I was diagnosed with ADD, bipolar, and psychosis. At about 17, I developed acid reflux - lots of throat-related issues like clearing it a lot, and post-nasal drop. All of this happened at the same time, basically. About 1 year ago. I had a genetic test done. There are two haplogroups related to celiac, I have the HLA DQA1 version (the most common). There are 13 (I believe) SNPs related to celiac disease. I have 12. My cousin had a similar issue and did NRT. And she's never felt better. They didn't give her diagnoses but told her to watch her dairy intake. What are your thoughts? Is it safe to assume I have the disease? I want to be myself again, but I don't know how to do that unless I know what's causing the problem. And please please please don't tell me to see a doctor, because some of us can't afford it, nor can we afford putting another medical issue on our profile. Thank you!

[ravenwoodglass]

You do sound like you could be one of us. Idealy you need to be diagnosed. There are blood tests for celiac that you can order yourself and have drawn at a local lab and then sent to your doctor.  It is important to have a diagnosis if you are ever hospitalized and to get needed testing for vitamin and mineral levels. You may find some of your other diagnoses were actually celiac related. Celiac can impact brain function and mood and many get relief from stuff like depression etc with the diet.  You do have the option of going strictly gluten free without a diagnosis but if you do you would have to do a gluten challenge for up to 3 months before you could be tested. It can be harder to get the support of loved ones and roommates etc without a diagnosis as it also impacts their lives. What ever you choose to do I hope you can get some relief soon.

[fletcher96]

On 2/17/2018 at 3:27 PM, ravenwoodglass said:

You do sound like you could be one of us. Idealy you need to be diagnosed. There are blood tests for celiac that you can order yourself and have drawn at a local lab and then sent to your doctor.  It is important to have a diagnosis if you are ever hospitalized and to get needed testing for vitamin and mineral levels. You may find some of your other diagnoses were actually celiac related. Celiac can impact brain function and mood and many get relief from stuff like depression etc with the diet.  You do have the option of going strictly gluten free without a diagnosis but if you do you would have to do a gluten challenge for up to 3 months before you could be tested. It can be harder to get the support of loved ones and roommates etc without a diagnosis as it also impacts their lives. What ever you choose to do I hope you can get some relief soon.

Thank you for your reply. I am seeing the campus NP this week. I'm getting all the tests they offer because they are only like $10 for the blood panel and the one that tests vitamins and stuff. Looking at my records from the past, it is worth noting how fast I am approaching hypothyroidism. Last time I was tested, my TSH was .71. That was 4 months ago. And I also have low BUN and creatinine, which I just noticed because the doctor didn't point it out. She only pointed out my slightly low potassium level and said the rest was normal haha. Those two are both serious and related to kidney and liver. You seem knowledgeable. Are kidney and liver problems characteristic of celiac? Otherwise I can create a new topic on this.

[ravenwoodglass]

On 2/25/2018 at 12:01 AM, fletcher96 said:

Thank you for your reply. I am seeing the campus NP this week. I'm getting all the tests they offer because they are only like $10 for the blood panel and the one that tests vitamins and stuff. Looking at my records from the past, it is worth noting how fast I am approaching hypothyroidism. Last time I was tested, my TSH was .71. That was 4 months ago. And I also have low BUN and creatinine, which I just noticed because the doctor didn't point it out. She only pointed out my slightly low potassium level and said the rest was normal haha. Those two are both serious and related to kidney and liver. You seem knowledgeable. Are kidney and liver problems characteristic of celiac? Otherwise I can create a new topic on this.

Sorry I haven't replied sooner. Busy weekend at work. Good to hear you will be able to get blood work done. As to kidney and liver issues they can be seen. Liver panels often go back to normal after the body heals.  I am not sure about kidney issues but I do know I had a great deal of edema prediagnosis that went away gluten free. Don't know why though. With some tests there can be some variation is what is normal for someone.  If someone is ill, for example, that can throw off some blood work that will normalize once they are better. A couple points below scale might not be concerning to a doctor. They might want to just repeat those tests a short time later to see if the levels are more off. 

I hope you get some clear answers and are feeling better soon.