The Celiac Girls- Blog Post 2 Seeing the Specialist

So, our wait was not that long (usual is 3-6 months), since we accepted a last minute cancellation. I took the girls, and decided not to tell them their diagnoses.

Why? Because I wanted to confirm that this was 100%. There are always false negatives. I knew the likelihood was not that common, but I was still hoping….

We met with the pediatric gastroenterologist, and she basically explained to me what Celiac was, what their test results were, what it meant for them, and that there was a small chance that they could just have the “sensitivity.” Hillary more so than Lauren because Hillary’s numbers were lower.

She recommended they have an upper GI scope. This is where they would put the girls under IV sedation, take a tiny camera in their mouth, down their esophagus to look at the upper area of their GI.

www.beyondceliac.org

They would look for things such as inflammation of the cells, and “flattening” of the villi. They they would take a tiny little sample of their colon to send away for biopsy. The procedure itself would take 3 minutes, but the whole process was about 20 minutes and then another 20-40 minutes for them to wake up out of sedation.

Then, they were to be off of school for the remainder of the day for us to closely observe them. Side effects included gas, bloating, feeling of fatigue. They were to eat as tolerated, clear simple foods and first, and gradually progress to regular foods throughout the day.

Why did they want this test? Apparently, even though the blood test confirmed that they 98% had the diagnoses, this scope would basically seal their fate… or… or maybe they would be the lucky 1% and have a misdiagnoses. I was pretty confident that that was not the case. My husband who has Celiac was not interested in putting the girls through that. However, it was suggested by the GI specialist, so I agreed to it.

Our test was at 8am, meaning we had to be at the hospitals at 7am. They were to have nothing by mouth from midnight on. Which I thought would be difficult, but they did really well.

They understood. Although they would constantly complain of being hungry, but I promised them we would go to Denny’s for lunch, so they were ecstatic about that.

Fast forward to two weeks after. The results are finally in, and we have a follow up appointment.

On our drive there, I decide, it is time to share the news with the girls. My dreaded moment…

I start off by explaining the tests, and the blood work. They both sat in the back seat… quiet, somewhat understanding. I ask them if they understand why dad can not eat certain things, and they seem to be able to explain that to me very well… so yayy!

They kinda get it.

Then… I gently drop the bomb….

Their reaction was nothing that I would of expected..

Hillary was kinda “ok, no big deal”, and Lauren……

…….she burst out crying.

Ugh… it was not as easy as I was hoping for.

Lauren screamed.

And cried and said “it was not fair”.

As my eyes welled up with tears, but I sucked it in, opened the window for some fresh air, and offered some uplifting solutions…. not that I had very much at that time…

Now, even though they have been eating gluten for 7 years without any symptoms, the long term effects are what we were to be concerned about.

Lauren’s big concern was that she could no longer eat her “Lucky Charms”. Really??! I am not a big fan of Lucky Charms anyways, all they do is eat the marshmallows. I guess the point is that it is something that they enjoy, and now, all of the sudden it is being taken away from them. I get it.

The specialist shares with us the results, which we already knew.

She tried to go over diets, and how to be gluten free, blah blah blah… I am not sure if she was aware that I live with a Celiac husband.

I listen to be considerate, and the girls were there listening as well.

She wanted us to get a bone density test, which I refused. She was kind of in shock that I refused it. My rationale was that, it was not a necessary test. My two girls were in the 99th percentile for height and weight, so I was not the least bit concerned about their bone density.

She said, “well, are you not concerned that it may have affected their bones”. She made me feel a little… like… not a great mom… but I didn’t care. I am a nurse, I am a mother. I am well aware of my rights to refuse tests. It was not like I was refusing to immunize them. I simply felt that there was no need. If my children were frail and underweight, I could see the rationale. Now don’t get me wrong, don’t just listen to me and what I did. You need to follow your doctors recommendations and if you disagree, then you need to discuss that with them.

Anyway, the specialist recommended follow up in six months, a repeat blood test to see if their levels go down being on a gluten free diet. She suggested that I cut the gluten from their diets cold turkey. UGH. COLD TURKEY!?? That broke my heart.

After the doctors visit, we went to the grocery store and I had the girls pick out what gluten free snacks they wanted to try. They were happy about that.

And just like that, today our gluten free journey began. With a Celiac adult, it was a different. You kind of know what you have to do and for what reason. So, when something doesn’t taste quite right, you just move on. For kids…. they don’t quite understand. It is very tough to go from a nice soft pizza, to a hard, flat pizza. There are so many changes and adjustment you sometimes just disregard.

I have three other kids that were on regular diets. Many of my colleagues and friends suggested that the whole house go gluten free. I contemplated back and forth about it, and decided at this time to just try to have the two adjust to a gluten free diet. I know it was going to be difficult and unfair. However, I knew that we were already 60% gluten free. The only problem was that I already had one really picky eater, and the gluten free options were already very slim.

So the challenge, being a half gluten free home, dealing with the adjustments, trying out different food options, trying to not make the little ones feel left out, new baking challenges, new adventures, and dealing with siblings. Life is not fair sometimes, I know that to be true. However, when life hands out lemons…. you make……??!!

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