New here with questions :)

[Mermaid's Mom]

Hi everyone!

I am here for my daughter.  We have an appointment tomorrow with her Dr regarding having her tested for Celiacs.  She is 12.  She has been diagnosed with Sensory Processing Disorder and we have knocked many of her issues up to that. 

In a nutshell:She was "normal" when young though she has been chronically constipated since age 3.  Also was sensory sensitive.  She was always the brightest in her class.  Active. Took dancing etc.  Normal healthy child.

In grade 2 she started with anxiety.  Also noticed an increase in her quirks and she became a picky eater.

In grade 4 she struggled socially and at some point was no longer able to sleep anymore (lost track of when that kicked in)

In grade 5 she lost the ability to swallow food.  Literally lost the muscles and strength to chew and swallow and needed extensive therapy to learn to eat again.  Based on classroom teacher feedback it was also suggested that we test her for ADHD.  By now she was noticeably struggling in school and we knew something was going on.   Since then our lives have spiraled out of control!  She has been diagnosed with ADHD (but we KNOW it isn't!!) she has been diagnosed with SPD (we agree with this) she has Visual Processing Disorder, Auditory Processing Disorder, Dyspraxia (which is a co-ordination disorder).  She is chronically constipated.  Requires melatonin to sleep.  Debilitating fatigue, severe brain fog (but brilliant when it is lifted), always says she has tummy pains (it is sore or "swirly).  Has learning issues at school as a result of brain fog.  Misses a LOT of time.  Had vertigo last year.  Also started complaining about her legs being tingly (and hands) and we saw a neurologist who uncovered a B12 and Iron deficiency.

I was aware of the brain/gut connection and desperately wanted to put my dd on a gluten-free diet but will her eating disorder I knew we had to relearn a lot about food before we could be successful.  Finally a week ago I felt we hit that point and we started her 100% gluten-free.  In doing research on gluten-free I also read about celiac and almost fell over by the symptoms!  Here we have been puzzled by this crazy downward spiral my daughter has been on and it sounds like a severe gluten reaction to me!

I made the appointment for blood work but by the time she goes in she will be one week gluten-free and I can't stomach the idea of feeding her Gluten to get a proper reading.  Will I get a false negative as a result?  What are my next steps?  Do you think it sounds like Celiacs?

Thanks in advance!

[GFinDC]

Welcome Mermaid's Mom!

It very well could be celiac disease causing her issues.  Two weeks off gluten will affect the testing, but there is no way to know for sure how much.  The 2nd part of a formal diagnosis is an endoscopy to check for damage to the gut lining (villi).  She needs to be on gluten for both of those tests.  Generally, the endoscopy takes some time to arrange.

She doesn't need to eat a lot of gluten for testing.  A cracker or a slice of bread a day is enough.

In the meantime, you could read up on gluten ataxia, which is a celiac condition that affects the brain.

[Mermaid's Mom]

I saw that mentioned before "gluten ataxia" but was already processing so much I glossed over it.  Will go look into it!  Thanks

So is the blood work just a simple blood draw?  Can I go get it done right after we see the Dr or is it typically with a specialist etc?  Should I let her eat gluten tomorrow for the test.

After one week of gluten-free she reports no "improvement" which doesn't surprise me obviously but I have noted that she has only once said her tummy was sore.   With her food issues she can be rather rigid about foods (specific brands etc) and she has not complained ONCE about these foods.  She says she actually likes them better and hasn't asked to cheat etc.  That alone tells me that on some level they are "agreeing" with her even if she doesn't realize it.

Thanks for your reply!

[Mermaid's Mom]

WOW!  I just read up on it!  Very interesting!  Definitely mentioning to our Dr tomorrow!

[cyclinglady]

Welcome.  Here is more information about screening.  You may want to delay the blood draw for a few extra days to offset being gluten free for a week, but talk to your doctor!  

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Open Original Shared Link

Open Original Shared Link

The blood draw is simple and can be done at any time and ordered by any medical doctor.  A celiac can be symptom free or have many symptoms beyond the GI tract.  It can take weeks, months to years for a person to recover (hopefully, less for kids).  Anemia (either from B-12 or iron deficiency) is now the most common symptom.  

I wish her well!  

 

 

[Mermaid's Mom]

Thank you cycling lady!  Those are great resources!

[Ennis-TX]

Yep I suffered from the gluten ataxia, grew up slowly going in a downward spiral, They always thought it was ADHD and Bipolar, we later confirmed I do have Aspergers and the ADHD, Bipolar like stuff seems to have cleared up to some degree with the gluten-free Diet.  In addition to the b12 and Iron look into Magnesium it is a common issue and can lead to the tingly sensation along with a fire like sensation and constipation.  I have had to deal with the chronic constipation since I was a child, seems it might have lead to to some of my current complications for not treating it soon enough. After diagnosis we normally suggest a gluten-free diet of just whole foods no dairy for the first few months to jump start the healing. With her constipation issues I really would suggest removing dairy, and seeing about a high fiber diet, supplementing with natural fibers like adding ground flax, chia, etc to the meals.  Here are some helpful links once you do get started after diagnosis. I also suggest seeing about having any other family members tested this is commonly a genetic disease, and there are silent forms of it where you have no outward symptoms.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

[Mermaid's Mom]

THANK YOU!  I do suspect that my family has Gluten issues.  My sister has been gluten-free for 2 years and with my own intestinal issues I decided to go gluten-free the minute my daughter did.  Honestly I CANNOT imagine taking her off dairy!!  Maybe down the road but this gluten-free change has gone so smoothly that I suspect I will get kickback and she will abandon the entire idea altogether.  She is almost 13 so I really do have limited control about what she does outside of the house.

I think once we create a new normal with food I will consider it then.  And to be honest she isn't a  HUGE dairy eater but she loves mac n cheese and cheddar on potatoes etc.

I have her on a very good probiotic and Omega 3 but will def look into the Magnesium.  It has been on my radar for a while. 

Question:  Do you have an official Gluten Ataxia diagnosis?  If so...how did you get it?  Do I need to request an additional test? 

[Ennis-TX]

Not really, it is just another symptom of celiac disease that can manifest, as a auto immune disease it effects all of us differently. Also on the mac and cheese there are plenty of dairy free alternatives. I make my own dairy free cheese sauce to smother over foods and in dishes. There are ones out there by Daiya, Udi, and a few others for gluten-free and Dairy Free instant mac and cheese. That gluten-free alternative list should make the transition as a family easier. Look up the thrive link and select gluten-free under diet, you can also choose the Dairy Free option. It is a online grocery store essentially. Bunch of other links there give information on different brands and there is even a post there with links to UPC codes and how and where to order foods from your local grocery store.   Note we suggest dropping dairy just first hte first few months as it will jump start the healing, same with the whole foods part of it. 

My gluten ataxia issues got so bad I was going crazy, brain fog and damage so bad I was loosing feeling in my hand and feet, brain damage, and would go so angry at how confused I was getting and wondering why stuff was no longer making sense or connecting it would lead to violent outburst.

 

[cyclinglady]

I know that you are desperate at this point in finding a solution for your daughter (mine is 16, so I get it), but celiac disease does require her to be on gluten.  Why is a formal diagnosis important?  You said it yourself....doubt.  You daughter will most like doubt your diagnosis.  She is a stakeholder in this and needs total buy in or she will cheat when she is away from you.  The gluten-free diet can be so hard to manage as a teen when all you want to do is fit in.  

If she does not have celiac disease, then consider trialing the diet (she may have Non-Celiac gluten Intolernce and there is no test to determine it),  but she has to be willing.  

She might not have lactose intolerance.  It just happens to be the most common intolerance as the enzymes to digest lactose sugar are released from the villi tips.  If damaged, the body can not release them.  celiac disease damage can be mild or severe and patchy.  Each individual is different.  

[Mermaid's Mom]

A formal diagnosis isn't important actually.  In fact we just left the Drs office and declined the blood test.  Our Dr says that 9/10 come back as negative even though the person has gluten intolerance.  And it cost me $85 and it won't change the trajectory of what we need to do moving forward.  So we opted out.

My daughter is actually 100% on board.  Like in a shocking way!  She has eating issues (briefly mentioned in my first post) and for years she was rigid about foods.  Specific brands, cooked ONLY certain ways, not touching on and on.  As much as I wanted her to be gluten-free years ago I knew she would not get on board.  Based on how things have improved I decided she would now be able to handle it and she is - with ZERO kickback.  In fact she is making mature choices and sacrifices all in the name of staying gluten-free.  But my gut feeling (pun intended) is that I will lose her enthusiasm if I eliminate dairy also.

In fact the Dr today said that in order to really do this properly that we need to also eliminate the gluten-free breads that we have used to replace her much loved staples.  So for the next 3 weeks she wants her to be Carbohydrate free as well.

We are up for the challenge but I need to be realistic also.  She still has MAJOR sensory issues.  The texture of many meats and fruits and veggies bother her.  The smells turn her stomach.  Kids with sensory eating issues stick to a diet of goldfish crackers and pizza because they are consistent reliable tastes and textures.  If you threw 2,937,366 goldfish crackers on a table they would all hav ethe same smell, taste, size, texture.  If you threw the same number of blueberries down you might never find two identical.  I still have to work within the limits of her current issues.

Baby steps! LOL!

[Ennis-TX]

Pretty much carb free myself, certain other medical issues make it so I can not eat them without issues. Have some lovely paleo recipes using nut meals for cheddar biscuits, cheesy garlic knots, cinnamon cake, etc. Nice to hear your daughter is on board. BTW another reason we suggest the diagnosis is that there are medical plans, school plans, etc and things later in life that require the official diagnosis. If your doctor is willing to put she has it in writing in her records that might work. 

[Mermaid's Mom]

17 minutes ago, Ennis_TX said:

Pretty much carb free myself, certain other medical issues make it so I can not eat them without issues. Have some lovely paleo recipes using nut meals for cheddar biscuits, cheesy garlic knots, cinnamon cake, etc. Nice to hear your daughter is on board. BTW another reason we suggest the diagnosis is that there are medical plans, school plans, etc and things later in life that require the official diagnosis. If your doctor is willing to put she has it in writing in her records that might work. 

I am in Canada so there might be some difference in that regard - in terms of medical plans/health insurance?  If that is what you are referring to?  As well in school she is accommodated up the whazoo! LOL  She is legally considered disabled (due to the SPD and dyspraxia) and although it is an invisible disability she is entitled to all the rights and privileges of all disabled people.  The school knows that I am like a dog with a bone and will fight for her to be accommodate properly and I am happy to pull out the "disabled" card if they get out of line

Given that...lol...my Dr clearly stated that there are 3 ways that a diagnosis is given 1.  Blood test  2.  Biopsy  3.  Elimination diet that is successful.   So she is happy to give her the diagnosis if we see the improvements that we are looking for.

[Mermaid's Mom]

36 minutes ago, Ennis_TX said:

Pretty much carb free myself, certain other medical issues make it so I can not eat them without issues. Have some lovely paleo recipes using nut meals for cheddar biscuits, cheesy garlic knots, cinnamon cake, etc. Nice to hear your daughter is on board. BTW another reason we suggest the diagnosis is that there are medical plans, school plans, etc and things later in life that require the official diagnosis. If your doctor is willing to put she has it in writing in her records that might work. 

I would love some of these recipes by the way!  Do you mind sharing?

[Ennis-TX]

7 hours ago, Mermaid's Mom said:

I would love some of these recipes by the way!  Do you mind sharing?

Posted some here in the recipe cooking section of the forum, I PMed you more of them on a link, trying not to flood the post.

[squirmingitch]

As far as the dairy goes, as cyclinglady said, it's really about the lactose. You could buy lactose free milk and hard, aged cheeses have little to no lactose as the aging/enzyme process eliminates the lactose so things like a good, quality, nicely aged cheddar or swiss, parmesan should be okay for her. 

I don't know if you have Lactaid brand in Canada but if so, there is lactose free ice cream & cottage cheese. I know too that Breyer's makes a lactose free vanilla ice cream. 

[GFinDC]

12 hours ago, squirmingitch said:

As far as the dairy goes, as cyclinglady said, it's really about the lactose. You could buy lactose free milk and hard, aged cheeses have little to no lactose as the aging/enzyme process eliminates the lactose so things like a good, quality, nicely aged cheddar or swiss, parmesan should be okay for her. 

I don't know if you have Lactaid brand in Canada but if so, there is lactose free ice cream & cottage cheese. I know too that Breyer's makes a lactose free vanilla ice cream. 

You can also get almond milk, rice milk etc.  So Delicious brand makes a coconut ice cream too.

[Mermaid's Mom]

14 hours ago, Ennis_TX said:

Posted some here in the recipe cooking section of the forum, I PMed you more of them on a link, trying not to flood the post.

Oh Awesome!  Thank you!!

[Mermaid's Mom]

1 hour ago, GFinDC said:

You can also get almond milk, rice milk etc.  So Delicious brand makes a coconut ice cream too.

This is great info!  The only dairy she eats really is Parmesan ( I buy fresh grated) and old cheddar.  She hates milk and could go without yogurt.  The only other dairy (lactose) she would eat would be hidden in foods like mac n cheese sauce.  She is quite happy to eat a homemade cheese sauce so maybe this is easier than I suspect!!

[Ennis-TX]

7 minutes ago, Mermaid's Mom said:

This is great info!  The only dairy she eats really is Parmesan ( I buy fresh grated) and old cheddar.  She hates milk and could go without yogurt.  The only other dairy (lactose) she would eat would be hidden in foods like mac n cheese sauce.  She is quite happy to eat a homemade cheese sauce so maybe this is easier than I suspect!!

Going to say on this one of my cheese sauce recipes and noodles from either lundberg or one of the other companies in the gluten-free food alternative list I gave you might work, just make the sauce with more liquid or less starch and make it runnier. I love making my queso, or the cheddar one and pouring it over broccoli or with Miracle Noodle carb free noodles.  Side of one of my breads goes great with this kind of dish. I have a recipe for making a vegan Parmesan that is quite popular in my seasoning blends list. The cheesy dorritos powder or chili cheese powder seasonings are also crazy good over dishes or in breading blends.

[Mermaid's Mom]

31 minutes ago, Ennis_TX said:

Going to say on this one of my cheese sauce recipes and noodles from either lundberg or one of the other companies in the gluten-free food alternative list I gave you might work, just make the sauce with more liquid or less starch and make it runnier. I love making my queso, or the cheddar one and pouring it over broccoli or with Miracle Noodle carb free noodles.  Side of one of my breads goes great with this kind of dish. I have a recipe for making a vegan Parmesan that is quite popular in my seasoning blends list. The cheesy dorritos powder or chili cheese powder seasonings are also crazy good over dishes or in breading blends.

Thank you!  I was just coming back here to say that as soon as I walked away I realized that she also loves:  Sour cream (a lot!) ice cream, frozen yogurt, milk shakes, cheese cake, cream cheese, alfredo sauce on and on...lol!!  I really need to look into dairy alternatives! LOL!

[Ennis-TX]

Kite hill makes cream cheese, ricotta, etc. Daiya also makes them, so delicious makes yogurt, whipped cream, whipped spreads, you can  the yogurt with real lemon powder for a sour cream knock off for  powdered dip mixes, yumrush.com has these. posted a alfredo recipe before. Will see about getting you some links in PM and posting a few to the site...

[Mermaid's Mom]

3 hours ago, Ennis_TX said:

Kite hill makes cream cheese, ricotta, etc. Daiya also makes them, so delicious makes yogurt, whipped cream, whipped spreads, you can  the yogurt with real lemon powder for a sour cream knock off for  powdered dip mixes, yumrush.com has these. posted a alfredo recipe before. Will see about getting you some links in PM and posting a few to the site...

Thank you!!!

[squirmingitch]

Here's a chart listing the amount of lactose in common foods:

Open Original Shared Link

Looks like sour cream & cream cheese are right down there very low along with the hard cheeses.