My Celiac Story

So being gluten free I often get asked lots of questions like “How did you know you had a problem with it and what were my symptoms?” So I figured I would just write about it in hopes it might help someone struggling as well.

Living GF has its challenges but over the years I’d says it’s gotten a lot easier. I actually found out right before Christmas about 9-10 yrs ago, what an awful time to find out such tragic news one might think, LOL! I cried!

I’d say probably in my late teens I started noticing like Mac & Cheese, spaghetti, lasagna, and breads seemed to bother me but of course I didn’t know what it was so I just stopped eating it. I didn’t know anything about food allergies and such.

Not only is food nourishing and needed to sustain us but if you think about it there’s also the social aspect side of it as well I will discuss that as well. When I was single it didn’t matter much because I could order and do as I please but I remember after my husband and I got married it became more of an issue. For family/friend get togethers people would make big pots of spaghetti or lasagna and bread because it’s easy for large groups, I totally get it. It started putting me in uncomfortable positions because it made me feel sick and didn’t like it or want to eat it. Sometimes I think it was perceived negatively like “You’re being a diva” and difficult but in reality I didn’t understand it myself, I just knew it made me sick but how do you explain something to someone you don’t understand yourself?

So fast forward after my 3rd pregnancy, I had lots of weird issues begin. Chronic fatigue was awful, I mean I know having 3 small children is draining but it was more than that. I remember one of my friends saying “3 kids is the same as 2!” Hogwash I tell ya!!!!😂

At the time we lived in Virginia and I can just remember trying to get out of bed every day to be Mommy and wife was such a struggle. The daily chores of life felt impossible, cooking, cleaning, laundry, dry cleaning, grocery shopping, etc. Plus my muscles were achy, tender and stiff. I had trouble getting off the “baby weight” and my hair was extremely dry, so was my skin. I was depressed and I couldn’t figure out why other than not feeling well.

I had a friend come visit me one day and I answered the door and she said “Nicole! Oh my goodness, you don’t look good!” Thinking thank you dear friend for encouraging me LOL. We talked for a bit and she said I think you have thyroid disease, you need to go to the doctor.

So I took her advice and went to doctor and come to find out my TSH was 134! The doctor says “I don’t know how on earth you are sitting there!! This is awful. I’ve never had a patient this bad before.” So she put me on meds right away and told me it would take some time to feel “normal” again. She kept having to raise the dose ever so often. All the while I’m having more intestinal issues but still avoiding Mac & cheese, spaghetti, lasagna and bread.

I guess it was probably another couple of years went by we had moved someplace different and by this time I was on 300 mcg of synthyroid and literally the doctor argued with me that I couldn’t be taking my medicine properly because my dose was so high. He says “I’m doing more test on and I’ll found out if you aren’t.” Thinking seriously dude, you’re a jerk! So after more testing turns out I had Hashimoto’s thyroid disease, which is an autoimmune disease.

This is where I begin doing my own research and things start piecing together for me. So in my searching I discovered Celiacs disease and how there is a strong link between Hashimoto’s and Celiacs and that since I had Hashimoto’s I should have been tested for Celiacs especially given all my symptoms. After I read the symptoms of Celiacs, I KNEW beyond a shadow of a doubt that’s what I had. I mean every single time I went to Chick-fil-A with girls I’d get a sandwich or nuggets and not long after I’d be in the potty and it had become increasingly more with other foods as well.

So I finally went to the Gastro dr, he did a barium enema…..Why I don’t know??? I wouldn’t wish that on my worst enemy LOL. I told him all my symptoms and asked if he would check me for Celiacs and he said “No I didn’t have that, it was very rare and that I just had IBS.” What an idiot!

Several more years went by, we ended up in Birmingham. We had been here about 3 years and my symptoms had gotten much worse. I became very anemic, other vitamin deficiencies, diarrhea, intestinal pain, developed Litchens, and the chronic fatigue got much worse and eating in general was just no longer pleasant at all.

Somehow I found out my half sister had Celiacs and that’s was it, I knew! I went to my doctor and told him AGAIN all my symptoms and about my half sister also having it and begged him to test me for Celiacs. He reluctantly agreed to saying “It’s your money, I KNOW you don’t have it. It’s so rare but I’ll do it.” In the meantime I also went to an allergist to test for food allergies. She felt it wise to test for Celiacs as well.

So the allergist does all this food testing the nurse comes back in to tell me and literally had tears in her eyes and said “I don’t know what you’re going to eat.” She starts listing off everything I was allergic too. I did have Celiacs first and foremost. Then I was allergic to diary, eggs, chicken, nuts, gluten (wheat, barely, rye, and oats), potatoes, and 2-3 other things I can’t remember. Remember at the beginning I said I found out at Christmas time, it was the next week. I just cried! But I was also relieved to finally know and to know it WASN’T in my head and it wasn’t IBS. So then the doctor comes in and says “All I want you to do is stop eating gluten, don’t worry about all the other allergy tests. I think because you’ve gone so long being undiagnosed you are just hypersensitive to all foods right now.” And that began my life long journey of living gluten free.

My primary called the next day and told me to come in for my results which I already knew. He says to me with his head hung low “You had all the symptoms I just really didn’t think you had it. It’s so rare.” Bet he wasn’t sorry enough to refund all my monies from every trip I went to see him and he was wrong?!?! Of course not.

Almost immediately going GF I could tell a difference, now every time I ate I wasn’t running to the bathroom. BLESSED! Doctor said it would probably take a year or more to heal my intestines and she had me take L-glutamine 2-3 times a day. I also did digestive enzymes with every meal and probiotics twice daily. Life was good!

Interesting tidbit, the longer I was gluten free my endocrinologist was able to lower my synthyroid more and more to the the point that it was cut in half. Why??? Because I wasn’t having malabsorption issues like I was before, and not that I wasn’t taking my medicine as I was accused of years before. Pretty amazing if you ask me.

The social side of Celiacs

I recently went on trip with my husband. Some of his employees from certain areas like 90 of them won a trip so we got to go as well.

With Celiacs not only can you not have gluten but there’s a whole cross contamination thing. So if you made fried chicken and then made me gluten free chicken but used the fried utensils I would still get sick. So you have to be extra careful. I can’t stand being made a fuss over but eating out sometimes that’s just what it feels like. Everyone begins ordering and then the waitress gets to YOU….now I have to explain I have a gluten allergy. Celiacs is NOT AN ALLERGY, but I find people understand better when I use that term when ordering. Then I have to explain how my food has to be prepared and cross contamination issues etc, it just sometimes feels like your being front and center and I hate that but I didn’t choose to have this.

Back to my story, they make arrangements for my meals ahead of time and they are brought out separate from everyone else’s because it’s a buffet and I can’t do buffets for cross contamination reasons. One lady at the table says “Oh, the bosses wife gets special treatment, I see?” Uggghhh I could’ve lost it!🙄 I mean really?!?! You’re eating from an amazing buffet and I have like 1/3 of what’s on your plate because I can’t eat gluten but I have “special treatment”. Are you kidding right now?

I politely said “No, I have Celiacs and can’t have gluten.” and she says “Ohhhh!”

That’s just rude if you ask me. But I run into that kind of stuff a lot. I still have a certain family member who will offer me gluten filled foods and then act completely shocked I can’t eat them. I’m like “No I still can’t eat a Dunkin Doughnut.”🙄😭 as much as I’d like too. It’s been how many years now? Then another older generation that just gets very sassy and mad that I can’t eat what they offer me.

Just gets me how people are about this kinda thing, in our family we have people with gluten, soy, wheat and potatoes allergies so it can be interesting. I guess that is part of my anxiety about going to other people’s houses for parties, holidays and staying is because of our food issues. When we travel I do take GF snacks on most trips but not meals.

I know people don’t mean to act bothered or maybe they do LOL, I’m choosing to believe they don’t but when they ask “Can you have this or this or this or this?” and it’s all no then you start feeling like your being a burden and their aggravated. We shouldn’t feel that way because we have a disease or allergy that makes you eat differently from someone else.

Same thing with eating out, it can be challenging especially with Mexican or Chinese, both of which I love. But often there’s a language barrier. I can’t always eat at every restaurant and sometimes people get bothered by that. But if the shoe were on the other foot, they would want people to be kind and thoughtful of them and remember they had a “allergy” and it’s not always a simple life but it’s my life.

But then there are special friends who will make an entire gluten free meal and makes you feel special and not like your “different “. Those are the best😇

So what’s the take away-

Through my journey I have learned to listen to my body, I know myself better than anyone and not all doctors know everything. Despite what they think, they can actually be wrong. So don’t give up if you think something is wrong keep looking and searching till you figure it out.

God has been with me every step of the way and He will be with you. But I will say even when I thought the doctor was wrong there were times when I should have been more proactive and assertive but I doubted myself because I “thought” doctors are smarter and know more than me. I should’ve listened to God first, He puts that still small voice on the inside of you for a reason, LISTEN TO IT! If I had been more confident and bold, things might not have gone on as long as they did. No one knows your body better than you. Even after I suspected I had Celiacs it was still prolly another 15 years that went by before I was finally diagnosed. Don’t let that be you! You MUST BE YOUR OWN ADVOCATE!

Food for thought-

I am thankful for this journey I have been on because God has used it in many ways and because of it I have been able to help others along the way and isn’t that what it’s all about? God will take your mess and give you a message. Your problems and pain won’t be wasted my friend, He will use it if you let Him. To God be the glory! Many blessings on your journey to wellness and I pray God leads and directs each and every step.

Big hugs,

Nicole💗

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