My Celiac Journey part 2

 Living the Gluten Free Life! 

First a little more about Celiac and the genes that cause it:

What predisposes a person to developing Celiac? 

“The Human Leukocyte Antigen (HLA) genes are linked to many autoimmune diseases such as celiac disease. Everyone has a copy from the mother and a copy from the father. These copies can come in different versions called alleles. The HLA gene alleles that predispose a person to celiac disease are called DQ2 and DQ8. (the information provided here was searched and copied from Bing) 

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The genetics of celiac disease can be confusing.

Everyone has HLA-DQ genes. In fact, everyone inherits two copies of HLA-DQ genes—one from their mother and one from their father. There are many different types of HLA-DQ genes, including HLA-DQ2, HLA-DQ8, HLA-DQ7, HLA-DQ9, and HLA-DQ1.

It's the HLA-DQ2 and HLA-DQ8 gene variants that raise your risk of having celiac disease.

Since everyone inherits two HLA-DQ genes (one from each parent), It's possible for a person to have one variant copy of HLA-DQ2 (often written as HLA-DQ2 heterozygous), two variant copies of HLA-DQ2 (HLA-DQ2 homozygous), or two normal copies of HLA-DQ2 (HLA-DQ2 negative).2

In addition, there are at least three different versions of the HLA-DQ2 gene variants. One, known as HLA-DQ2.5, confers the highest risk for celiac disease3; about 13% of Caucasian residents of the U.S. carry this specific gene.4 However, people with other versions of HLA-DQ2 also are at risk for celiac disease. (the information provided here was searched and copied from VeryWell Health)

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If you have two copies of the DQ2 gene you have the highest chance at 31 times greater of developing Celiac. I have personally been tested and I carry the HLA-DQ2 gene, which is 31 times greater to develop Celiac from. 

Like I said in my last post, is that I do not really know when I started developing my symptoms but I do know prior to March of 2019 when I was told that I carried this gene and that my chances of having Celiac were greater, my symptoms were growing more prominent hence the reason I went to a Gastroenterologist to try to find out what was causing them. 

I would say sometime in January or February of 2019, I went to my first Gastro appointment. My PCP had sent a referral to them to set up an appointment with them for me because I had casually mentioned to him at my visit with him, that I suffered a great deal with heartburn. It had gotten to the point that it was very bothersome. I had also had a few other mild to moderately severe symptoms that I had noticed. They were loose stools, gas, vomiting my food would back up after eating and I would have some mild stomach pain along with a lot of bloating. And it seemed that no matter what I ate or how much of it; that I would have these issues. I also had other issues that I didn't associate with these, going on that I will mention later. But my main concern and looking for some relief was for the ones mentioned and mainly for my severe heartburn. 

So once my appointment got made, I almost decided not to even go because no other PCP prior had ever seemed concerned to send me anywhere to get help, so I kind of figured that I was going to be wasting my time. But, I went ahead and went just to see if I would end up getting the help I needed. And, I am so glad that I did go and not back out after all. The results that I would receive afterwards would change my life forever. 

So, my test results came back. I was tested for Celiac and for Alpha Gal and my Alpha Gal was negative but my Celiac panel showed that I carried the HLA-DQ2 gene which is a higher risk of developing Celiac Disease.

Now just because someone who carries the Celiac gene, doesn't mean that they have Celiac. So they brought me in to have a biopsy done with a Endoscopy. That was done on March 27, 2019. I was told to not change my diet until that was performed. So, I didn't. 

But...March 28, 2019 was when my whole diet changed to NO GLUTEN. And its been like that ever since. I kind of regret not just indulging in like one last meal full of gluten. Like a nice Krispy Kreme doughnut or a Little Debbie cake or even a nice breakfast biscuit. But I didn't and of course now I wouldn't but they are a few of the things I really do miss the most. 

So of course my results from March 27th showed some food in my stomach that had not digested and my last food that I ate prior to the procedure was over 12 hours before. So the Gastro Dr. told me that indicated some gastritis and I don't really remember much else he told me that day because I was still groggy from anesthesia, other than to start a gluten free diet. 

So the next day, that is just what I did. Of course I hardly knew what I was doing or what gluten was at that time. But I did a lot of research and I also saw a dietician a couple of times to guide me in what to do. I wasn't to sure on what the Gastro Dr. had told me from being groggy so I called several days later to his office and I was told that I had non celiac gluten sensitivity. Which I was sensitive to gluten but did not have Celiac. Remember not everyone who carries the gene has the actual disease but is predestined to get it by consuming gluten. 

I waited for my follow-up appointment a few weeks later and was given the full results of my biopsy from the endoscopy. I saw the NP that day which is who I had originally seen that wanted to test me. She went over my results and said that the biopsy didn't indicate that I had Celiac Disease yet from carrying the gene, but from what she could see from the pictures that they took during the procedure, that it appeared that I had it. She pointed out to me why she thought that I did have it. I could have been in early stages of it. But from all of the symptoms and conditions I have had that stem from Celiac then I am convinced that I have it also. And once you get it, of course it is non curable. But with a Gluten Free diet, you can help heal it. 

Other than a couple of Dietician visits, that ended my follow-up care. I eliminated gluten from my diet and follow a strict gluten free diet to continue to heal my body. Because if the NP was correct and I do have Celiac then by me continuing to consume gluten then it can cause more harm to my body. Or if I don't have Celiac then I could cause myself to get it by continuing to consume gluten. My chances of developing it would be more at a risk of developing it.

So I made a decision that first day not to consume it anymore. And I figured, that it may last about a week if I was lucky and I would be right back at eating things I shouldn't but I am proud to say that it has been four and a half years now and I am still living the Gluten Free Life. 

It has not been easy, but I can say it has not been as hard as I imagined and I am very proud of myself for sticking with this. I guess you could say that the main reason that I have stuck with it was to see how it would make me feel. If it hadn't effected the way I had been feeling then I am pretty sure that I would have not stuck with it. 

But I could tell a difference within two weeks and that got me excited about sticking with it. It did take longer to start feeling a whole lot better. That is how it works with someone with Celiac, your body starts healing once you stop consuming gluten and it can take up to 3 months to start completely healing and sometimes up to 6 months for full healing. And it did just that for me. So that is another reason that I am convinced that I do have Celiac. 

Celiac is an autoimmune disease. So there are no cures and once you do develop it, you have it for life but Celiac is one of the easiest of the autoimmune diseases to be able to deal with after your body heals because you only need to eliminate gluten from your diet and not have to be on any medication for it. Now, Celiac can cause other issues, a whole lot of other issues which I have had to deal with bringing me to being even more convinced that I indeed have it. 

Celiac can be developed at any age. And can be triggered by several different things such as trauma, childbirth, illness, other auto immune diseases. Most people with Celiac go years before being diagnosed. Also, a lot of Celiac people lose weight or can not gain weight. But some can gain weight and that was the case with me. 

I started out small when I came into the world as a preemie weighing in at 3 lbs. and staying small throughout my childhood, teens and into early adulthood even being slightly underweight during this time. I didn't really start gaining a little extra weight until after I was married and started cooking all of the food and eating what I wanted to. Which still didn't put me at being overweight at that time. And then after my pregnancies in my late 20's is when I gained more weight and then not being able to lose it after my last pregnancy didn't help before I gained even more. 

Up until then I was a picture of health at each of the doctor visits and it was probably closer to my late 30's that I started having any kind of issues. The main one that I started with and held onto was my first pregnancy in 1994 which ended in a ectopic pregnancy but I started with heartburn then and then it continued on with my second pregnancy and just never really went away for very long after that. In fact it is still one symptom I still have if I don't use any medication for it. So, I am not even sure why I have it other than I was told I have acid reflux but I haven't been able to pinpoint what is causing it.

So anyhow with more and more issues developing that I was trying to ignore along with having a very hard time losing weight, I finally was able to get the help I desperately needed. But until then I just kept thinking that most of my issues all had to do with getting older. And I guess I let these symptoms go on and on for at least close to ten years without doing anything about them. 

I know that I would mention to my PCP at that time about my heartburn and he wouldn't prescribe anything for me or send me anywhere to see what was going on so I would take OTC medicine for it and go on about my business. But it was finally in 2019 that I mentioned it once again because my PCP moved away and I had to find a new one. Oh, and the first one also told me to lose weight and that would help. I wish now that I had said something back about that but I was in shock that he said that. And the thing is I wasn't at my heaviest weight at that time but had gained enough to be considered overweight. But, I had been suffering with heartburn even when I was a healthy weight. So I wish I had told him that weight had nothing to do with it. But no, I continued to suffer even longer.

By that point I was so outdone with everything that I was almost just in the state of depression for it and felt like I would never figure out what was going on. And of course ignoring my symptoms was the easiest thing to do at the time to help me cope but of course it wasn't the wisest. But they were hard to ignore completely and I knew that I needed to do something about it but what. 

By 2019 I had gained about 45 extra pounds since I first got pregnant and I had developed all of these unpleasant symptoms that just were getting more severe instead of going away. And I kept telling myself that it must not be anything too awful bad or I would be losing weight instead. 

I have now since then lost up to 40 lbs but fluctuate 3-5 lbs constantly. But I am a few pounds still considered over weight. But I am not worried about those few pounds. I am just glad that I was able to lose some instead of gain even more. 

So back to my Celiac journey, I have continued with my gluten free diet and have lost weight, along with not having the unpleasant symptoms listed above with the exception of the heartburn which is better than it used to be. And I am still trying to figure out what could still be causing it. I think I know but that is another issue I deal with and which can also be caused by Celiac. (sighhh). 

I will have to do another blog on all of my other issues that I have been diagnosed with due to Celiac. 

So, anyway after I had been on my new diet of eliminating gluten, I started feeling so much better and it took close to over a year to finally feel like a new person again. I didn't realize how bad I really felt (or maybe subconsciously I did, until I started feeling better but then 2020 rolled around and BAM.....that is when COVID hit and then 2021 came in and so did my symptoms of yet another disease. I developed Meniere's Disease. I talk about my Meniere's Disease in other blogs because out of the two diseases that is the one that has totally effected me in so many ways. Emotionally and Physically. But I am now working through that and am overcoming some of my symptoms with it. You will have to read my blogs on my story with that. But as far as the Celiac journey, I am still doing well with that and healing but have accidentally had a handful of accidental glutenin moments, with some things. Which turns into unpleasant situations but thankfully by continuing with no gluten I can heal once again. 

And for those wondering, NO gluten free is not tasteless and it won't make you lose weight either. Some people chose to eat gluten free because they think it is a diet but it is not really a diet or at least not a diet plan. It is a lifestyle change. And no, it is not unsafe to do unlike what some reports I have seen about it. Gluten free food is mostly natural foods like meats, vegetables and fruits or anything that wheat flour, rye, barley or malt has not been added to. Those ingredients are what gluten is. And it gets its name because is like a glue that helps foods stick together and not fall apart like with bread and anything else its added to. 

For a person who carries the celiac gene, our small intestines can not digest gluten so therefore it sits in our stomachs and doesn't get digested causing the loose stools or diarrhea, vomiting and other symptoms I've listed. 

I just happen to lose my weight that I did from my body healing. I believe that it was holding on to extra weight and with me bloating all of the time it was reeking havoc on me. Even when I first began the gluten free diet, I chose a lot of foods that were still not healthy and therefore was not helping with my diabetes that I was also diagnosed with neither was it helping with my weight. Because for a brief time I did gain half of the 20 lbs at that time that I had lost. But then I got back on track and tried to make better decisions on what I ate so that I wouldn't gain all of my weight back. 

If you think that you may be suffering from any of the symptoms that I have talked about and have not received a diagnosis or have gotten the run around then have your Doctor or a Gastroenterologist do a celiac panel on you. Make sure they test to see if you carry the gene because if you do then that means you have a chance to develop Celiac Disease. If you have the gene and not the disease then they still recommend going on a gluten free diet to keep from getting the disease. 

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