to biopsy or not?

[The Five I's]

My daughter is 4 years old and was diagnosed with Hashimoto's autoimmune hypothyroidism. She also had a celiac panel done and the only abnormal measurement was TTG IgG. Her TTG IgA level was normal. She has gone to the GI doctor who recommends a biopsy. My husband and I were on board with the idea, but have been hearing from every direction that we should skip the biopsy and just change her diet. Now we are split. I think we should do the biopsy and he is not quite sure. On top of that, he had a terrible dream about the procedure. Everything that could go wrong went wrong. She even ended up dying in his dream. So of course that doesn't help. Can anyone give advice for or against the biopsy?

 

One of my main reasons for wanting to do the biopsy is that I don't want to take the gluten free diet lightly. We have never done well at changing our diet. We eat out too much as it is, and when we eat at home it is just the standard American diet. We're not health nuts, and I'm concerned that she would not be fed properly because we would get lazy.

 

Thank you in advance,

Janis 

[SLLRunner]

Welcome, Janis.

If your doctor has advised your daughter get the biopsies I would follow through. Celiac is a serious auto-immune disease and eating gluten advances the disease. It's better you know what is up with your daughter's health rather than second guessing, because then you will know what the next step is. 

[Irene Joanne]

Get the biopsy- it's so much easier to stick to the diet when you know for sure.  

[calli]

Janis,

 I hope you do get the biopsy, because if anything it will help with what is going on from the inside. Like, any kind of sores or etc.

I'm anemic and the dr. wanted me to do a upper GI, but I've always been anemic and I have to learn to take my iron. But still I feel as though I

should go for the upper GI because there might be something else going on. Being on the gluten-free diet has helped a lot, I just wish I had this blood work done yrs ago. Who know how much damage it has done. Besides being anemic, I am very much tired.

[jmssl]

Dreams come from whatever your worried about.. your fears. 

Fact.. most people are fine with biopsy. I recall it as not the nicest experience but it wasn't too bad. I opted for NO sedation. So i felt a little discomfort but wouldn't call i terrible it was grand. If. wAs to do it again i would also go with NO sedation. However this must  an individual choice or made with dr advice who knows ur daughters other issues

 

Hope all goes well

[cyclinglady]

Basically, celiac disease must be confirmed by biopsies.  Sad, but true.  I understand your husband's fears.  My own hubby worried about me having a C-Section.  We had no choice at the time, but the end result was worth it -- a lovely baby girl!  

 

Open Original Shared Link

Open Original Shared Link

[Gemini]

I think considering the age of your daughter and your own admission you might have trouble sticking strictly to the diet, plus the fact her blood work was not terribly conclusive, it might be a good idea to have one.  

Doing the biopsy depends on many factors but for kids, those dopey docs never believe it unless they see damage themselves and take the photos.  As an adult, it's different.  Adults usually have much more damage because they have gone a very long time with it.  If someone, as an adult, fails the blood work by large numbers and fails most of the tests on the panel, a biopsy is not needed for a diagnosis.  There is other criteria that can be used but they don't accept this for kids.

One little heads up.........her tTg may be elevated due to her Hashi's.  She is also only 4 so it could very well happen that they will not find the damage because it may be patchy and sometimes it is missed in young children. The docs then will say she is fine and they will keep an eye on it. I don't agree with his but that's just me.  I would then do a dietary trial to see if anything changes with her blood work and symptoms. I have kids in the family who I KNOW have Celiac and their parents will not feed them gluten-free until the damage is bad enough to find on biopsy. I just can't imagine doing that to a child.

Good luck!  Hope you get the answers you need.

[SLLRunner]

4 hours ago, Gemini said:

 I have kids in the family who I KNOW have Celiac and their parents will not feed them gluten-free until the damage is bad enough to find on biopsy. I just can't imagine doing that to a child.

Do you mean their bloodnwork has confirmed these children are celiac? And the parents won't feed them gluten free? That is scary. 

[Gemini]

1 hour ago, SLLRunner said:

Do you mean their bloodnwork has confirmed these children are celiac? And the parents won't feed them gluten free? That is scary. 

Let me clarify........these are my nieces and nephews. Their mother was just diagnosed, although her blood work was positive but they are doing the usual and won't bless her with Celiac until she has the biopsy. She has multiple symptoms that scream Celiac.

I have suspected that one or more of her kids have it also. One has had nothing but medical problems since birth and he is so small for his age.  The other child has Type 1 diabetes.  She looks amazing but we all know how that works when you are 15.  The honeymoon phase of Celiac and hard to find/diagnose.  The docs are antibody testing them yearly but don't do the gene testing, which seems really stupid to me.  At least see if they carry a gene,  which they probably do because both my niece (the mother of these kids) and I have a double DQ-2. The father is Irish so the odds are higher.

I am anal about it because my brother, the father of my niece and the kids grandfather, died suddenly last summer and I strongly suspected Celiac.  He had severe symptoms, which they blamed on other health problems. It was heartbreaking to lose him. My family just are in denial about how prevalent it can be in a family. I went my entire life with Celiac and was all messed up at diagnosis.  I do not want them to ever have that experience so think testing ought to be more aggressive with them.  It can be very difficult to find in children.

[SLLRunner]

2 hours ago, Gemini said:

Let me clarify........these are my nieces and nephews. Their mother was just diagnosed, although her blood work was positive but they are doing the usual and won't bless her with Celiac until she has the biopsy. She has multiple symptoms that scream Celiac.

I have suspected that one or more of her kids have it also. One has had nothing but medical problems since birth and he is so small for his age.  The other child has Type 1 diabetes.  She looks amazing but we all know how that works when you are 15.  The honeymoon phase of Celiac and hard to find/diagnose.  The docs are antibody testing them yearly but don't do the gene testing, which seems really stupid to me.  At least see if they carry a gene,  which they probably do because both my niece (the mother of these kids) and I have a double DQ-2. The father is Irish so the odds are higher.

I am anal about it because my brother, the father of my niece and the kids grandfather, died suddenly last summer and I strongly suspected Celiac.  He had severe symptoms, which they blamed on other health problems. It was heartbreaking to lose him. My family just are in denial about how prevalent it can be in a family. I went my entire life with Celiac and was all messed up at diagnosis.  I do not want them to ever have that experience so think testing ought to be more aggressive with them.  It can be very difficult to find in children.

Thank you for clarifying. That sounds like a tough situation.  

[frieze]

On 2/23/2016 at 8:11 PM, Gemini said:

Let me clarify........these are my nieces and nephews. Their mother was just diagnosed, although her blood work was positive but they are doing the usual and won't bless her with Celiac until she has the biopsy. She has multiple symptoms that scream Celiac.

I have suspected that one or more of her kids have it also. One has had nothing but medical problems since birth and he is so small for his age.  The other child has Type 1 diabetes.  She looks amazing but we all know how that works when you are 15.  The honeymoon phase of Celiac and hard to find/diagnose.  The docs are antibody testing them yearly but don't do the gene testing, which seems really stupid to me.  At least see if they carry a gene,  which they probably do because both my niece (the mother of these kids) and I have a double DQ-2. The father is Irish so the odds are higher.

I am anal about it because my brother, the father of my niece and the kids grandfather, died suddenly last summer and I strongly suspected Celiac.  He had severe symptoms, which they blamed on other health problems. It was heartbreaking to lose him. My family just are in denial about how prevalent it can be in a family. I went my entire life with Celiac and was all messed up at diagnosis.  I do not want them to ever have that experience so think testing ought to be more aggressive with them.  It can be very difficult to find in children.

don't you just want to shake them till their teeth rattle?  can't, of course.....

[Gemini]

3 hours ago, frieze said:

don't you just want to shake them till their teeth rattle?  can't, of course.....

Oh.....you have no idea!  This has been the hardest thing for me to accept.......that I cannot make them see the reality of Celiac in their children. I have never experienced this level of denial before and I don't operate like that.  Everyone tells me to just let it go but it is so damn hard as it's kids that are involved.  I know all too well how badly this disease can screw you up if left untreated for years. Do people think I enjoy having 4 autoimmune diseases that I spend ridiculous amounts of time and energy managing? I feel like I work a part time job on top of my full time job. Seeing this is very painful and upsets me when I hear that one of the kids has developed another problem that is related to Celiac and still, the parents have their head up their butts. One of the biggest problems is that they are slaves to mainstream medicine and believe whatever the guy in the white coat says, regardless of how whacky it sounds.  I partly blame the AMA for setting the diagnosis standards so high that you have to get very sick before they find it. Yeah....that worked so well for me!

ARGHHHHHHHHH!!!!!!!!!!!!!!!!!!

[The Five I's]

Thank you for all the replies. I kind of imagined that was the response I would get on this forum. My husband keeps collecting opinions against the biopsy, but mostly from people who either don't understand or who are simply afraid of traditional medicine. It will be a long road, I imagine. Thanks again for the feedback.

 

Janis

[The Five I's]

So we did end up doing the biopsy.  It was inconclusive.  There is villous atrophy, but not enough to diagnose celiac.  There were no other significant findings.  However, the GI doctor said that with the "suggestive" blood work and the "suggestive" biopsy, celiac is "highly suggested" in the combination of them.  He just can't diagnose.  Thankfully, my husband and I are on the same page about getting off of gluten.  Our whole family.  Two adults and five kids.  I am so very grateful that we agree on that!  We are in the process of cleaning the gluten foods out of the house and cleaning the kitchen.  I look forward to having a gluten free house.

 

I was looking at the recipes we "used to" make and realized that by buying gluten-free ingredients, we can still eat most of the same food!  DH actually made fried chicken with a flour blend. It was good.  Really good.  So nice to be able to say that we tried something and it didn't flop.

 

DH's cousin's daughter has celiac and their whole family is gluten-free, too.  They ordered food off of Amazon for us and must have spent $200-$300!!!  The wife said she hoped it helped us to get started eating gluten free.  I should say so!  What a blessing that was!  That made it fun and exciting!

 

That's not to say I haven't been sad.  I need to find a banana bread recipe.  I know I'll miss bread products.  Baking was my strength in the kitchen.  I'll have to figure that out.  But it feels so good to know that we're doing the right thing for her.

 

Thanks for all the feedback on this post.  It's nice to have a place to go ask questions!

Janis

[squirmingitch]

If you like to bake & want fabulous stuff to make & eat then hold onto your hat because there is a cookbook out there that is nothing short of amazing! Get the How Can It Be Gluten Free Cookbook by America's Test Kitchen. Start with the first one & if you like that & I'm sure you'll go bananas over it then you can get Vol. 2. Breads that taste like real bread, biscuits that will make you moan with ecstasy, waffles, pancakes, a coffee cake that dropped down from heaven, cookies. Far too much to name. These people really know their stuff and I guarantee no one will ever know what they're eating is gluten free. They'll think it was made with gluten flour. 

[SLLRunner]

Janis, thanks for the update! I'm glad you went through with the endoscope and have family support. ?

[The Five I's]

 

If you like to bake & want fabulous stuff to make & eat then hold onto your hat because there is a cookbook out there that is nothing short of amazing! Get the How Can It Be Gluten Free Cookbook by America's Test Kitchen. Start with the first one & if you like that & I'm sure you'll go bananas over it then you can get Vol. 2. Breads that taste like real bread, biscuits that will make you moan with ecstasy, waffles, pancakes, a coffee cake that dropped down from heaven, cookies. Far too much to name. These people really know their stuff and I guarantee no one will ever know what they're eating is gluten free. They'll think it was made with gluten flour. 

I ordered the cookbook the same day you recommended it.  I am SO excited!  I actually cried looking through the book!  I honestly don't believe I am good at all in the kitchen.  I am lucky enough to have a husband who cooks everything when he's home.  The only thing I felt skilled at in the kitchen was baking.  I made all of my kids' birthday cakes for the last 8 years.  I was sad thinking that we wouldn't have anything good for a birthday cake.  I mean, I've tried gluten free cake from a box, but it was just ok.  It wasn't amazing the way a homemade cake can be.  So now I have hope.  Hope that maybe my non-celiac kids will enjoy a birthday cake still.  My daughter (the most-likely-to-be-celiac one) never really ate birthday cake to begin with.

 

So this summer is her birthday and we will find out if it's good!  Thank you for the recommendation!!!

 

Janis

[squirmingitch]

You are MOST welcome! No problem with making these recipes. If you just follow the directions they lay out, you will be absolutely fine! BTW, I chose to make everything using the flour blend they give you the recipe for. It really is better than the pre-made flours you can buy. To make things easier, I make a double batch of the flour blend and put it in a BIG tupperware (plastic) container & keep in the fridge. That way when I go to make anything I just scoop out the amount I need. Secondly, get yourself a cheap little kitchen scale. I got this one & it works great.

Open Original Shared Link

Mine doesn't have the removable glass or the kitchen timer but otherwise is just like this one.

This one is more like the one I got

Open Original Shared Link

Weighing out your ingredients makes a huge difference & really it's so much easier than measuring everything in measuring cups.

As far as the coffee cake recipe..... I changed it a little bit so it would be like a gluten coffee cake I used to make & we loved. It turns out a little more healthy as well with dried fruit I put in it.

I didn't make the topping that they do. These are the changes I made. In the batter, instead of the 1 Tblsp. of cinnamon I used 1 teaspoon. In the batter, I added dried apricots & raisins --- I do it by feel so I will say about 1/2 cup of each maybe a tad more. 

My Topping:

Then in a separate bowl I put about 1.5 teaspoons of cinnamon, about 3/4 cup of dark brown sugar, and some melted butter. Mix the dry ingredients & pour the butter in mixing the mixture with your fingers. You want the mixture crumbly yet moist. Put the batter in the oven for 5 min. & then take out & crumble the topping on top, then it all goes back in the oven & bake according to directions in the recipe.

You could add nuts, dried dates, any dried fruits or nuts you like!

 

Finally, you owe it to yourself to get some really good pans. This for loaves of bread as gluten free bread requires the extra height & support these pans give. You won't have to use parchment paper or make the tin foil collar which is a pita.

Open Original Shared Link

These are great for making the dinner roll recipe into burger buns:

Open Original Shared Link

[Gemini]

A small suggestion........for banana bread, try the King Arthur gluten free banana bread mix.  Yeah, I know......it's a mix but sometimes, time is short and a mix works well.  My husband and I were shocked at how good this is!  it rose up high and beautiful in the oven and has a really good banana flavor to it.  Really....give it a try.  It is so easy to make also!

Open Original Shared Link

 

The ATK cookbook is a keeper for every Celiac!

[squirmingitch]

Some other boxed mixes that I think are worth it are 

Open Original Shared Link

Open Original Shared Link

We didn't care for any of the other Namaste products but the Spice Cake IS very good.

Against the Grain Gourmet Frozen Pizza is really good! I hope you can find it at your local stores.

 

BTW, when I made breads of any kind from the ATK cookbook, when everything was totally cooled off I would wrap tightly in tin foil, slip that into a gallon ziplock & freeze. Slice things like laves of bread & rolls, buns, biscuits before you freeze them. Then I would just take out what I needed & heat in the convection oven or in the case of toast -- just toast it. Everything I froze turned out great so don't think you have to eat everything in 2 days. Of course with a family of 5 and how good this stuff is I imagine you won't need to freeze anything.