My Journey To The Diagnosis


Adapted from the Got Celiac? Blog Reposted: July 21, 2017 BY DALLAS MORABBI, THE GF PEACH GAL

THIS POST MAY CONTAIN AFFILIATE LINKS. PLEASE READ GF PEACH'S DISCLOSURE FOR MORE INFO.

Part One

I thought a lot about what my second blog should be about. Since a lot people just found out I had all these conditions, I thought the next logical thing is tell you how I came to these diagnoses.

This was a three year journey that I am going to break up into different parts because,, quite honestly, today is one of my bad days for pain.

Three years ago, a month after I married the man of my dreams, we found out we were pregnant. Talk about a honeymoon baby. 

The first trimester felt relatively normal, but then I began noticing a rash. I mean every person gets a rash here and there, so I didn’t think anything of it. Then it got worse, to the point where it was so uncomfortable I could not stand it.

So I set an appointment with my Army Physician Assistant to get a specialty appointment with dermatology to have this resolved.

I get to my appointment, go in and see Dr. T (remember this name!!!!, later he becomes such a blessing in this journey). I am pregnant, so he says he doesn’t want to do any testing and he will give me some topical cream.

Well I used that topical cream and it didn’t help, so I went back a few times to try a few different creams. None of them worked. Sadly, my poor husband had to look at my face that looked like I was going through puberty all over again. I can laugh at it now but back then it was definitely made me a little more self-conscious.

I also began noticing several other symptoms cropping up such as minor joint pain, FATIGUE, little bit of forgetfulness, aversion to some food because it made me feel sick. But I and the Physician Assistants all chalked it up to me being pregnant.

So, I just kept thinking about the greatest blessing I was about to receive which is my son and chugged along with my symptoms and the daily grind of being a pregnant military officer.

My son was born in March of 2014. YAY! We were ecstatic and just so proud of our handsome boy. Thankfully,, the military allowed me 6 weeks of maternity leave. During my leave, of course, I was consumed with learning how to be a parent! The BEST JOB ever! However, I was noticing I was losing weight fast.  For a woman who just had a baby this is typically great news (and expected for those who breastfeed).

This, on the other hand, was different.

I was fatigued (having a newborn will do that right?), joint pain was getting worse especially in the back (carrying a baby is why I thought this was going on), forgetfulness was high (lack of sleep I attributed this too) and I could just tell something was very off in my body. But I really dislike going to Drs., etc. So I just thought it was all because off just having a baby. I mean who was I question on what having a baby felt like? This was my 1st Baby.

Whew! Ok going to stop it there and will hopefully continue tomorrow. Thank you for reading. And please let me know if there are any suggestions or if you have any questions.

Part Two

The past few days have been crazy! I have experienced a lot of pain, discomfort, agitation, etc. I think because I am overdoing it while I try to accomplish everything I need to for the next chapter in my life.

My life after the Military.

In my last post, I left off with me having my son, being on maternity leave and having some symptoms. The symptoms that I just attributed to being a new mommy while my body just went through the majestically wonderful experience of pregnancy and delivery of a healthy baby boy.

Man those 6 weeks of maternity leave flew!

(I was blessed to get that amount of time because I know several people that get a lot less maternity leave)

It was time for me to get back to the grind of the Army life. I adjusted pretty quickly despite having my current symptoms. But within the first few weeks back I started to experience new symptoms. Just a few to note were quick bursts of a headaches, a rash that was spreading especially around my elbows, hips, and knees, and the excessively overwhelming fatigue. I caught myself several times driving to and from work starting to doze off (extremely SCARY! ).

That is when I said that I need to address this with a medical professional.

I dragged my feet to see a new PA and began explaining all my symptoms etc. They thought it was due to me breastfeeding/pumping and postpartum symptoms. I could tell something was pretty off in my body, but I trusted what the professionals said.

I kept trying to push through each day, but I was fading mentally, physically and emotionally. I reached my pre-pregnancy weight about 3 weeks after having little guy and it continued to slowly descend after that. If anyone knows me, they know that I am constantly eating throughout the day, so it was not due to a lack of eating. Once I reached 115 at 5’9 and continued to have worsening symptoms, my husband pushed me to stand up for my health and to be persistent to ensure the medical personnel are addressing all of my issues.

So I kept going back to the PAs (saw 3 different ones) and they just wrote it off as me breastfeeding and pumping each time. I was becoming increasingly frustrated because I felt that they were not listening to what I was telling them and, instead, just gave me the easy answer for them.

I finally had my fill of it, I was tired of feeling like I was being pushed aside because this was effecting the most important thing in my life. MY FAMILY.

I could not be the mom I wanted to be no matter how hard I tried. I could not keep up with my son that was becoming mobile, I couldn’t hold him and rock him for long periods of time (too much pain and fatigue). When I would come home from work, it felt like my body would just shut down and all I wanted to do is eat, shower and sleep.

Therefore, I took upon myself and booked another dermatology appointment with DR. T because I NEEDED to get one symptom in control. I hate to do this, but I am completely tapped out. I sort of forgot until writing this how many steps I had to go through to be diagnosed.

I wanted to say thank you to those who have reached out! Starting this has been so empowering and I appreciate all of the feedback.

Part Three

It has been a little bit since I have posted. I was on leave for my sister’s beautiful wedding and enjoying time with my number 1 priority, my family. I definitely enjoyed it, but it wore me out!

Anyways, I left off the last post with me going to a dermatologist, the amazing DR. T! I remember it so clearly. I was feeling terrible that day, and didn’t look well either. I was pessimistic about the whole appointment because of the past experiences I had with all the different PAs.

Dr. T’s nurse called me back weighed me (she said she wish was as thin as me- this statement was so frustrating. I knew what she meant because our society idolizes those who are thin. But I was/am UNHEALTHY thin and couldn’t figure out why). Then I did the initial questions, etc. and she says Dr. T will be with me momentarily. As I sat there and waited I prayed for me to receive some answers as to why I was feeling so awful.

And boy was it answered, DR. T came in and began with addressing the skin issue and asking questions about the rash. Then, he asked if there is anything else going on? (Incredibly Thankful for that question) Normally I would be like "no, I am fine" and just keep feeling crappy. But that day, I reeled off the list of how I was feeling.

Wow! It was a long one. He said I don’t normally do this but I can tell something is off and he ordered me lots of blood work. One of those panels was to test for Celiac.

I get a call from his office about a day later, and it was actually DR. T, not his nurse or administrative assistant. He says, "I think we have figure out a portion of what is going on. Your lab work testing for Celiac Disease came back positive. I am going to send you to the gastroenterologist on post, he is booked out for a month. In the mean time, to get a firm diagnosis on Celiac, I want to take a biopsy of your skin to see if it is Dermatitis Herpetiformis." (Because there are only 2 ways you can be diagnosed with Celiac – 1. Lab work positive and you have Dermatitis Herpetiformis or 2. Lab work positive and an endoscopy with biopsies). Turns out, I had Dermatitis Herpetiformis all that time.

He recommended I go ahead and look up what it means to be on a gluten free diet because that is currently the only treatment for Celiac Disease. Needless to say, my husband and I looked up extensively what the disease was and what I needed to do to get better. We also went shopping for all kinds of gluten free food, finding out that sometimes foods with gluten free didn't work for me and others without gluten free labels are gluten free. 

A month later, I went and saw the Gastroenterologist and was officially given the diagnosis of Celiac because of my positive blood work and Dermatitis Herpetiformis. He also set me up with an appointment with a Celiac specialist ,at a nearby hospital, because I was still losing weight on the Gluten Free Diet, still having a lot of pain and still experiencing other symptoms. I will talk more about these visits in future posts.

And that is the lengthy process it took me to getting the Celiac Diagnosis.

I am going to hold off on talking about my other diagnoses and how I received them. I am going focus on Celiac for the next posts, to change it up some. Which will entail some of my favorite Gluten Free brands, information on the disease and common misconceptions etc. Then, I will talk about my diagnoses of Fibromyalgia and Raynaud’s Syndrome.

Also, I have started an Instagram account if you would like to follow me @TheGF_Peach. I post some random thoughts/pictures, products that I enjoy, and of course positive thinking.

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