BlessedMommy

My kids are not on a restricted diet anymore, but I don't like them to have commercial candy for other reasons. We don't trick or treat, but my kids wound up with a bag of candy from homeschool co-op. I gave my kids money for their bags of candy and then bought them some goodies from the health food store. They didn't feel at all deprived.

Anyway, I'm so glad that I got things ruled out at least for the time being. Had I stayed with my old doctor, even getting tested once most likely would've never happened.

Now that I have this ruled out, I can use my energy on actual issues and focus on finding the real cause of things, rather than chasing rabbit trails. I'm so glad that my doctor was cool with checking thyroid and b-12 too. This new doctor is definitely a keeper!

This is an interesting topic. I own an Excalibur dehydrator so I'll be watching this thread.

All first degree relatives should be tested.

I would definitely do the endoscopy, if possible. Celiac is a lifelong diagnosis, and especially for a child, you want the diagnosis to be as bullet proof as possible. I would find a doctor that doesn't nullify high bloodwork numbers with a negative biopsy though, since very high bloodwork almost certainly means celiac, even if they couldn't find any damage from the particular samples that they took.

I think that I'm simply going to go with the symptom approach. My doctor is aware of my severe issues with gluten, so I will let her know that if my kids develop migraines or neuro symptoms (or the more classic celiac symptoms) that I want the kids tested ASAP. I don't even know if I have celiac (I could have some other issue with gluten like gluten ataxia or NCGS for all I know), so I'm not sure that testing them every couple of years no matter what would be very helpful.

I hope that consuming gluten outside the house will be enough for them, because I simply cannot have large amounts of gluten in the house regularly. My kids are young, and no matter how many times they are reminded, do not always remember to avoid touching gluten free food with their hands after eating gluten. My 2 year old also has a habit of grabbing at my face and trying to put her fingers in my mouth.

Genetic testing for re is a good idea.

I'm not familiar with the abbreviation. What is re?

I need to make a list of these concerns to take back to the doctor. I'm so glad that I have a doctor who appreciates patient input and takes my concerns seriously.

I'm also wanting to see the actual numbers on my daughter's tests. If they were borderline, I might pursue things more.

In other words, if a 20 is positive and she scored 19, then I would be inclined to retest her after a few more months of gluten consumption, rather than dropping the issue.

I'm an undiagnosed strictly gluten free person and I would be the first to tell you that it's better to have a diagnosis, if possible.

I don't have a diagnosis, because my symptoms when reintroducing gluten for testing were extremely severe. Eating gluten daily for 3 months could disable me or kill me, so I've chosen to live as a celiac would and practice strict avoidance of gluten for the rest of my life. 

If you're eating gluten currently, there's no reason not to take the tests and many reasons why they are beneficial. I often think to myself, what if I had gotten tested before gluten free? Celiac wasn't even on my radar then, though, and it never really occurred to me that I could be celiac. I just figured that if my symptoms resolved based on the elimination of wheat, then I was gluten sensitive. It was only much later that I learned what I needed to know about celiac and by that time, it was too late to get DX'ed.

One thing that I think is good about having a diagnosis is that many undiagnosed people only follow a semi gluten free diet. I cannot stress enough how easy it is to cut corners when you think that you're "just" gluten sensitive and not celiac. Non-celiac gluten sensitivity (NCGS) can only be diagnosed by ruling out celiac first. You cannot truly know that you're not celiac if you never got tested. 

I've made my stance on living gluten free pretty clear to most friends and I try to just bring my own food nearly everywhere. It makes life so much easier that way.

But if I had the opportunity to do it over again and get tested? I would do it, no question.

Excellent idea! If my daughter got the gene tests and they came back negative, it would save us a lot of time and hassle.

Our next appointment is November 5th.

Now, to focus on dealing with my daughter's 1 autoimmune disease that she's currently diagnosed with (vitiligo), hopefully we can get some answers for that! We see a specialist at the U of M this Friday.

We also screened for thyroid and B-12 and those numbers were normal. I'm glad--since people with vitiligo are more prone to AI thyroid diseases and pernicious anemia.

I think, though, that doing genetics is a good idea. At least if I tested negative for genetics, I could save myself the trouble of testing the kids in the future. (unless they develop symptoms of course).

She thought that the symptoms sounded really worrisome and apparently outside a celiac reaction, I don't believe so, nor do I think there would be any point to going to an allergist.

I've thought of genetic testing, but I don't have an extra $600 to go get it done. 

So how should I broach it with the doctor? Technically speaking, I'm not DX'ed, but the doctor knows my situation and my inability to complete the gluten challenge due to extremely severe symptoms. I've also talked to her about my recent neuro symptoms that I suspect were from gluten exposure after starting the kids' gluten challenge. She was concerned enough to suggest that I go see an allergist when I told her about my neuro symptoms.

She mentioned doing an endoscopy for me, but I pointed out that it wouldn't be accurate after 4 1/2 years gluten free anyway. (plus I'm uninsured)

Should I ask her to treat me as a celiac then, as far as testing for the kids goes?

This one looks like it might be good.

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Sounds like a good plan! (admittedly I'm a little biased, though, because of my very negative experience with gluten challenging myself. My daughter's gluten challenge went fine, but she ultimately tested negative, so that's probably why)

 Isn't Hashi's helped by a gluten free diet as well?

If your symptoms are neurological, be careful about gluten challenging. I can attest that gluten challenging and neuro symptoms can be brutal!

Good to know thanks! Sounds like if I treat them like DeBoles and sauce them up well, they should cook fine.

I usually use DeBoles oven ready lasagna noodles. If I sauce them generously and bake for long enough, they do cook in the oven, so I skip the boiling part.

I've made lasagna with Tinkyada occasionally, usually I just boil them for a few minutes on the stove. No real formula or anything.

Chia seeds are fine from a celiac standpoint. Just get a brand labelled "gluten free."

No need to make life any harder than necessary, by cutting out extra stuff.

I got the phone call from the doctor's office. The celiac tests came back negative. I'm thankful that we can move forward with that confidently ruled out. I'm thankful that I did the gluten trial and saw how well she did with that, as well as got the bloodwork run. If I didn't, there would be always be that nagging lingering doubt in my mind. The purpose of the tests was to give a clear yes or no answer as to whether she needed a gluten free diet, and I believe that we have accomplished that goal. Yay!

I will go over the results with the doctor. It will be interesting to see if they were borderline or if they were very low numbers. I also need to cover the abnormal CBC results with the doctor too.

My daughter is absolutely thrilled with the results and very happy to be out of gluten/gluten free limboland. I'm thrilled with the fact that I now no longer have to keep gluten in the house, now that her testing is presumably complete. She can just eat gluten at restaurants and friend's houses, no need to worry about getting in 1-2 slices of bread (or equivalent) every day.

Thank you to everyone for your support, we wouldn't have been able to get this taken care of without the support from the forum. 

I started reading different people's experiences and it seems that the accommodations at the hospital that I was at, was the exception rather than the rule. It is a very large hospital and the area celiac support group meets in their basement.

BYOF sounds like a good plan for most circumstances. Either that or the hospital staff could run to the store.

When my MIL was in our local hospital and told them that she was a vegetarian, they made a special trip to the grocery store for vegetable broth for her clear liquid diet. Seems like most hospitals could at least go to the store and pick up some frozen Amy's dinners, if nothing else.

I found this article and some others and I think that they mostly answered my question.

https://www.celiac.com/articles/21740/1/Tips-for-Ensuring-a-Gluten-Free-Hospital-Stay/Page1.html

I've seen it written a lot of times that you need a diagnosis to get gluten free meals in the hospital and I'm curious about this. I've been in the hospital only once since going gluten free (I stayed with my son in the children's hospital when he had a femur fracture) and they happily let me order off their excellent gluten free menu--no proof of celiac required.

Is this referring to hospitals that don't usually accommodate the gluten free diet and don't have an actual gluten free menu? Should I be concerned about what might happen if I were hospitalized in a hospital with no gluten free program since I'm not DX'ed?

Feel free to share your hospital experiences, good or bad and how the accommodations were. 

Sounds good! I'm not vegan, but my diet is similar enough to that (ovo vegetarian) that I end up eating lots of stuff marketed to vegans.

I grind a lot of my own flours if the recipe calls for something specific (i.e. millet flour, quinoa flour, etc.) but I do keep a bag of Pamela's Artisan flour blend in my kitchen. It's really helpful to have it on hand for when I just need to throw some all purpose flour into something quickly, like when I'm making cornbread.