LauraTX

Welcome to the forum!  As cyclinglady said, if you would like us to take a double look at your test results to make sure nothing was missed, we would be glad to.  Even if they are truly negative, you could have non-celiac gluten intolerance, or NCGI, and the gluten-free trial diet will let you know whether or not it helps.  Eat the way that makes you feel better

It really depends on the local places around you.  There are the usual chain restaurants, but the most important thing is that you have to take the same steps ordering takeout as you would dining in, and preferably get a manager on the phone to make sure they know it is serious since you don't have that face to face interaction.  That conversation can take some practice.  ("Could I kindly talk to a manager, I have some questions about food allergies")  For this reason, I only do takeout if absolutely necessary.  One other thing to take into account is how busy a place is- if it is mad rush lunch/dinner time, mistakes can be made more easily, so I avoid peak times.

A good place to start looking for safe restaurants around you is findmeglutenfree.com or the find me gluten free app (can pull up your location- really handy).  Just being listed on there doesn't make the restaurant safe because of all the fad gluten-free eaters (especially in a place full of hipsters like SF), go into the comments and look for something saying it is Celiac safe, or vice versa.  A lot of us on here, myself included, will leave comments to help other Celiacs out.  Also if there is a local gluten intolerance group or gluten-free organization, they usually keep a list or talk about safe local places to eat. Usually you can see on their social media pages where they have meetings at, those are going to be a safer bet.

Omg you poor thing, innocence taken by google!!!  Here is the correct link!

Open Original Shared Link

Looks like they don't ship but man do their offerings look nice.  They have a listing of locations where they are sold at here:

Open Original Shared Link

They probably kept the same link so people don't go back and use old, outdated info.

Laura, besides almost daily seizures, he is NEVER sick. I can't remember the last time he was actually SICK. What the doctor said, regarding the low IgA serum, and other dx is that its leading towards leaking gut. I don't know if other food intolerance besides gluten can cause that. He said leaky gut can cause inflammation in the blood stream and in turn irritate a neurological problem. 20 years of uncontrolled seizures is up and beyond a BIG neurological problem.

Absolutely leaky gut can exacerbate the neurological problem.  So can untreated Celiac disease.  Good to know he isn't sick much on top of everything else.

If his IgG and the subclasses are all normal range, I can confidently say you can breathe a little bit in that area.  Just having low IgA is not a big deal if all the others are intact.  IgG has the predominant role in protection against infection so unless he is getting sick all the time, that is not something to worry about.  Those kinds of immunodeficiencies are inherited and not caused by things like leaky gut.  

If you want to get his immune system completely checked out to erase any possibility of something specific being wrong, seeing the allergist/immunologist will not hurt.  There is something called "selective IgA deficiency" and usually that is something that doesn't need treatment. Per the Immune Deficiency Foundation: 

"Individuals with Selective IgA Deficiency lack IgA, but usually have normal amounts of the other types of immunoglobulins. Selective IgA Deficiency is relatively common in Caucasians. Many affected people have no illness as a result."

here is the full article on that.  Remember that a lot of the things they talk about apply to people who may have much less IgA than your son, and lack other things like IgG, so please don't get scared about all of it.  A lot of the people they deal with are closer to "bubble boy" type issues.

Open Original Shared Link

At this point, I really think the next step is to get properly tested for Celiac disease, so you can know without a doubt if that is it.  Have the primary doctor, or any doctor, order the Celiac lab tests.  Get him in to a GI specialist to have an endoscopy done so they can take a look around in there and get biopsies-make sure they take 6 in the small intestine since damage can be patchy.  

The diagnoses that are listed on the lab slip are there as a guide for the lab and insurance that explain why they were ordered, and can include things that are suspected but not totally confirmed.  I learned that from a lab technician when I asked her about them, when I had some things listed on there that were a bit scary.  So make sure to follow up on everything and get it done properly - have him eating gluten for tests.

Some vitamin deficiencies and having too much of certain vitamins can cause things like mouth sores.  Too much folic acid can cause mouth sores, so you may want to have your doctor pull blood levels of things to check all of that out.  Lack of B12 and anemia as mentioned above, can cause sores. Since us Celiacs are prone to deficiencies and usually supplement, sometimes things can get out of whack.  

Yes, it was just immunoglobulin G, sub class 1,2 3,4. So I know he was not checked for Celiac. I also have been reading that total serum IGA on just a regular lab test needs to be HIGH to lead towards celiac or gluten sensitivity.  My sons is LOW? am I missing something?

Hi Stacy, it looks like you may be a little confused on the tests.  The ones that were run were just the total IgG with subclases, and total IgA.  These are the general immunoglobulins that represent all of the specific IgG and IgA antibodies together.  The Celiac tests are the Tissue Transglutaminase (ttg) IgA and IgG.  They are different in that they test only for the very specific antibody that is indicative of Celiac disease. That test was NOT done on your son's panel.  His total IgA is a different thing than the ttg IgA.  The names look similar but are not the same thing.  The ttg IgA is what will will be high indicating celiac, NOT the total IgA that was run

Total IgA being low can just be a fluke, but it can also be indicative of a greater problem like an immunodeficiency.  Please keep the appointment with the allergist, usually they also do immunology, and get that looked into.  Get the ttg IgA (more specific test) and ttg IgG tests done by any doctor who will order the labs.  His total IgA being low may lessen the accuracy of any specific IgA antibody test, but will still work because it isn't so low it is near absent. .

Do you have the results for IgG and IgG subclass totals?  If you would like to post those, I am unfortunately very familiar with all that as I have common variable immunodeficiency and lack IgA and IgG.  So, hopefully I can give you something to go on with those results and help you steer in the right direction with doctors to save you some trouble.

Your tests for Celiac are not accurate as you did not have solid gluten consumption in the period before.  I highly recommend seeking out testing again, and doing a full gluten-eating period before it.  Your other choice, if you don't want to go through testing and such, is to just cut out gluten and stick with it for a long time, at least 6 months strictly gluten-free, and see if it makes an improvement.  If you do that and decide that it does help and you want a diagnosis, you will have to go back on gluten again.  So, unless you cannot tolerate it, I recommend testing now.

One of my favorites is Chebe mix.  It can be made with or without the cheese that the recipe calls for, both turn out great. I usually make mine without cheese since I put a lot on top, makes one nice big pizza and the crust holds together well.  Also, parchment is your friend when baking gluten-free and doing any kind of dough-like thing.  Good parchment will save you from some sticky messes!

It is plausible that something like Sjogrens could give you dry eye and make it more susceptible to infection.  Definitely follow up on that, and are you seeing an ophthalmologist?  If not, definitely make an appointment to get the eye looked at in depth, and discuss the possibility of that issue there.

When I go out to see family at a house and lots of people are there, I keep my food separate.  If something being prepared is ok to eat, grab yours before anyone touches things.

I highly recommend a place out of my area of Texas here called local oven.  They make a hoagie roll that is awesome.  I had the awesome experience of stopping in to their storefront and sampling everything... a lot of it is free of other allergens, too.  Open Original Shared Link  They recently made changes to make their shipping cheaper, as well.  Each item is individually vacuum sealed so they keep for like a year in the freezer.  I always keep their hamburger and hot dog buns on hand, everything else I use up before too long, lol.  Their "flour" tortillas are to die for, as well. They beat the pants off Udi's.

If you don't want to order and ship something, maybe just try a good hamburger bun recipe and make it more long. 

Do you have a good fried shrimp recipe?  I am sure others on here would love to have that.  I fry chicken occasionally, I use gluten-free Bisquik or White rice flour.

Welcome to the forum, Jesse!  

On the labwork do you have the reference range?  The normal value can vary depending on the lab used.  Did you have any other testing done?

Was it verified that the son has a known gene for Celiac disease?

I think your doctor is probably correct in the timeframe he gave you.  As things start to heal up and you are able to absorb it will get better, but do supplement even if you feel it is a losing battle... you will start to absorb it eventually  

Hi, Julie!

There absolutely can be withdrawal symptoms when you drastically change your diet, and a lot of people report withdrawal type symptoms when they go gluten-free... hard to pinpoint what it involves, but there definitely is a hurdle to get over when you take your usual foods away.

I was in your boat- I had no GI symptoms, just years of unexplained anemia and neuropathy, and got diagnosed by accident when they were looking at my gallbladder.  It took about 6 months on a gluten-free diet to clear both up.  Just the switchover to a different way of eating can throw your body off a bit, so just give your knees a little time for now to hopefully start behaving for you again.  It can take months to heal intestinal damage that leads to malabsorption and anemia, so that will take a longer time to resolve.  Did they say what scale of damage they found on your endoscopy?

You sound like you have all your ducks in a row and have researched, which is awesome.  Feel free to let us know any questions, we will be glad to help you out. Welcome to the forum!

Of course some things in the pasta come out into the cooking water.  That is why starchy pasta water makes a good pasta sauce base.  In other news, bears poop in the woods.

Also, bad headline here.  They didn't demonstrate any change to the proteins in the pasta.

Canyon bakehouse is good for a multigrain bun, but my favorite is a place called Local Oven.  They have their products in a lot of restaurants all over Texas and surrounding areas.  They are just like soft white bread... absolutely worth the ordering cost.  No weird taste like some of the products that are out there that one person loves and another hates, etc.  They all come individually wrapped within the package so you can thaw just one at a time and don't have to pry them apart after they are freezer burned.  Also, their tortillas are the best gluten-free thing I have ever put in my mouth.  Open Original Shared Link  

That is awesome, great that you found a good doctor!  I love the doctors that have online medical records, it is so great.  Some of the tests may take longer than 2-3 days though, lab time can be long with specialty tests.  Will be interesting to see what they say.

Speaking of waffles, all I can find now are the Belgian waffle irons. I like the waffles with the smaller holes better. No, I haven't looked online yet, but it makes me feel old. It seems that all of my favorite things are being replaced with stuff OTHER people like better. (grump, grump, grump.)

I agree that waffles with small holes are superior.  No pooling of toppings, everything uniform.  LOL

Hopefully someone here knows off the top of their head, but the best way to get up to date info is to ask the company, so if you haven't, go ahead and write them so they can get back to you in a timely manner.  

A good way to try and pinpoint subtle things like that is to keep a diary.  You can write down what you eat and how you physically and mentally feel that day.  It may help you put it all together after a while.

Doughnuts. Eat LOTS of doughnuts.  Eat raised doughnuts. Eat old fashioneds. Eat them chocolate covered and glazed. Eat some crullers and some jelly doughnuts. Eat some doughnut holes. Eat some with powdered sugar. Eat some Boston cream doughnuts. Eat every doughnut that comes to hand and please, think of me while you're doing it.

This.  LOL

But seriously, eat whatever you want.  They say the equivalent of blah blah blah and your doctor may have taken it literally.  Either that, or the person relaying the question may have just said no because they weren't sure.  But if you only want to do the gluten challenge and do it right, eat the heck out of everything gluteny if you can deal with it.  Just watch what you cook in your kitchen so you don't have to toss things out like a colander, etc.  

Mmmmmmm cake!  There are a lot of good pie dough recipes that can be used for those uses.  I use this recipe: Open Original Shared Link works and handles great. They have a recipe to replicate the flour blend used.  I have made it a few times and make sure to leave pea sized chunks of butter visible in the dough before rolling it out so it is still tender.