LauraTX

It is also always a good idea toOpen Original Shared Link, because of germies.  Good info, Peter.

I know it may sound a little odd, but one of my favorite things to eat when I am on the go around breakfast time is baby carrots and walnuts.   Will sometimes add raisins or some other fruit. Remember you don't have to eat "breakfast" foods only at breakfast time.

Ugh, filthy tablets/menus kill me at restaurants.  Sounds like a poorly run location.

Just looking at the ingredients online at Walgreen's website, I don't see any that are suspect.  They nicely specify corn starch.  Sleep well!

Guerrero is labeled gluten-free as well.  I buy that or mission.

If I weren't in a sickly phase right now this would be a really neat thing to do.  Especially as a childless couple.  There are a couple of support groups down there:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

If you got a lot of skin pricks done and have tons of histamines going on a rampage it may make you feel crappy overall.  See if a benadryl or other antihistamine before bed makes you feel a little better?  When I have had skin tests done, I was a itchy mess for days on those sites.

Gluten Free Creations is in the Scottsdale area, but check them out.  They also have a phoenix location.  I mail order stuff from them and they have a store/cafe there.  Open Original Shared Link    

I live in Texas so I only order from them in the winter months... don't want my baked goods baked again in the heat.

Just sounds like a CYA move on part of the company.  Their gelato is delicious, and since it is a best practice to always read ingredients anyways, I will continue to eat their gelato.  In general with ice cream, no gluten ingredients means it is okay.  Of course, that is a personal decision each of us has to make.  With the Talenti pints already at around $5 each depending on the store, they probably don't want to do anything else that will drive up the cost.

So, now I am craving it too and will have to make a grocery run!!

Not an ignorant question at all!  While there isn't much research on it, I have seen a lot of people on the online immune deficiency groups that say they never get a fever even if it is serious.  And I am the same way.  I always thought I was an oddball, but I only get a fever if I am very very sick.  But when I get something like a bug, it never spikes my temperature.  I do get low grade fevers when my temperature balance in my body kind of gets off which I have been told is from my lupus.  (like if the room is cold and I don't have a sweater) There has been some research done on why cancer patients who have had their immune system wiped out will get no fever with infection, but other than that it is just speculation.  I just assume whatever part of the immune system that causes fever is defective along with other defective parts in me.

As far as frequency of infection goes, that and severity of infection should be looked at equally.  All kids his age do not have fully developed immune systems yet and catch everything that is going around, so a lot of times the differences start to really show when they are older.  And it is very likely, but not provable, that he had the same stomach bug as the rest of the family.  I say that because I see the same pattern in my husband and I.  Usually when we both get sick at the same time, I will show symptoms before he does, and his will be much shorter overall while I have prolonged issues getting over it.  One time right before I started IG infusions, we got food poisoning at the same restaurant.  I was in the bathroom that night, and he was in there the next afternoon.  While he had a couple of uncomfortable bathroom moments, he was okay the next day.  I had four days of bloody diarrhea and was weak and ill for two weeks.  So do take note of that kind of thing occurring and let the immunologist know.   That can be helpful information to get documented in case they decide he does need any treatment.

I feel for the poor guy, and totally understand your frustrations with inconclusive medicine.  Things stop being cut and dry when they get into these specialty areas.  Also, a lot of medical professionals don't even know what a primary immunodeficiency is other than hearing about it in school and never seeing it again.  And if they know what it is, they really don't know much about the diagnostic process and such.  So you have to arm yourself by reading up on it and doing things like insisting on antibiotics if there may be a bacterial infection, and insisting on tamiflu if you think he is starting to show flu symptoms during flu season.  That can help to prevent some of the infections from getting as severe.  But for me, GI bugs are the worst, because there is nothing you really can do but ride it out.  

On the poor immune system side of things, before I was treated for immunodeficiency which includes my low IgG and low IgA, any time I would get a GI bug or food poisoning it would be BAD.  Like husband would have diarrhea for a day, I would have the most severe kind for 5 days.  So him having a weak immune system is going to make things take a little longer and be more intense some times.

I actually found a gluten free cream of mushroom soup that tastes really good.   now i'm just searching for a onion soup mix and ya it does make me question that company so i'll have to make my own onion soup mix

Thats what I get for posting in the middle of the night, lol

Also, would like to add that making your own cream of mushroom soup is very very easy.  You just make a cream sauce with mushrooms in it.  A recipe like this works great:

Open Original Shared Link

Just use your favorite gluten-free flour blend, or white rice flour, brown rice flour, etc (just not a nut flour no starch for the sauce in there) to make it gluten-free.

And if you want it to taste like the classic canned kind, add about a tablespoon of salt and leave out most of the mushrooms (Yeah Campbells, that was an insult).  Sherry can be left out, not really necessary.   If you don't have that exact combination of ingredients, just google recipes, lots of combinations of cream, milk, broth, etc.  Just use a gluten-free flour for the flour.  If you are not sure if yours will work, I will be glad to let you know what I think, I have tried a lot.

It is also made in a facility that also processes wheat.  So in this case, if there are other options, I would go with the certified gluten-free one.  The glutamates statement sounds like ignorance of what gluten actually is, and makes me not trust the maker of the product to make correct statements.

With his potential immune issues that are being looked into, it could be that he does have a stomach bug and is getting hit very hard.  Unfortunately in these circumstances there just isn't a good way to know.  But it never hurts to be more cautious about germs and more strict about gluten.

For those reading, IVIG stands for intravenous immunoglobulins.  It is what I receive for my immunodeficiency.  There have been some trials done with IVIG for autoimmune issues, but in very general terms, in many cases it is found that very high doses are needed to help, and because a standard IVIG dose can run around 15 thousand dollars (varies by product and dose) these treatments are not cost effective for long term use.  

Also, once you start on IVIG treatment, any blood test involving immunoglobulins (IgA, IgG, IgM, IgE) can be a false positive, because you are receiving bolus doses of immunoglobulins that are derived from donor plasma.  So, the celiac disease tests that involve IgA and IgG can potentially be false positives while you are on IVIG therapy, so do keep that in mind if you do Celiac testing and consult the study doctor if you are doing any kind of antibody testing outside of their office.  Also, IVIG therapy has many side effects associated with it, and it can be quite unpleasant for the average patient.  These are at average replacement doses for an immunodeficiency patient that I am referring to- and because it is life sustaining treatment we have to deal with it or we will be more sick.  This is also a hurdle for other uses of IVIG especially when it is very high dosing.  But the cost is the #1 stand out problem.  I hope everything goes smoothly for you in the study and you see some good results.

I use these, they are the CVS brand and gluten-free Open Original Shared Link

They go on sale buy one get one half off, plus coupons, etc.

Damage to the villi can absolutely cause a domino effect.  The most notable and prevalent is lactose intolerance, because you need healthy villi to properly digest lactose.  Other things can fall into that category too, especially if you were already prone to issues with certain foods in your previous state.  Even more reason to be 100% strictly gluten-free to heal up once you are done with the gluten challenge.  Hopefully the damage won't be as bad this time and it won't take as long for the onion issue to go away, but you just won't know until it happens.

Folic acid levels are something that change with time, and are not detected by a genetic test.  (Unless it is a genetic condition they were screening for that can also cause low folic acid) But I assume your psychologist had you get some bloodwork done to check for vitamin deficiencies and they found a low folic level.  A psychologist is not a medical doctor and definitely not a Celiac specialist so I am glad they gave you the "I don't know" answer instead of making something up when you asked if it was related to your Celiac disease.  A low folic acid level, as well as low levels of other vitamins, can be related to malabsorption from Celiac disease.  I recommend you make an appointment with a GI doctor to regularly get follow up testing to ensure you don't have any long-undetected deficiencies, and have that medical doctor who can advise you on safe supplementation.  Most gluten-free foods are not fortified, so the University of Chicago Celiac Center Open Original Shared Link.  

I also take Mylan levothyroxine, which is a generic.  A lot of doctors will have patients take brand name to prevent them from moving from one generic to another.  With levothyroxine, the doses are so tiny, that a slight difference between brands can cause blood levels to fluctuate.  So when you take one generic brand, stick with it.  If you change brands, go get your thyroid levels checked 6 weeks later.

As for the doctor insisting you take brand name synthroid despite it not being verifiably gluten-free.. just firmly tell him that you cannot take that medicine as it may contain gluten, and have him write you a script that allows generic substitution.  Then find one manufacturer and stick with it.

There are no scientifically valid tests (aside from the genetic test) that are accurate when one is not consuming gluten.  Getting something like that is a top priority for Celiac researchers but they are not there yet.  While I understand it is easy to assume something is not affordable, why don't you contact your lab of choice and ask about pricing before you assume as such?  Any money you spend on a diagnosis is an investment in your health for the rest of your life and well worth it in my opinion.  Also, unless your insurance plan has a stacked deductible, you are not going to be paying 100% out of pocket for lab costs.  You can get information on what your portion would be from your insurance company so you can estimate costs and save up to get them done if that is needed.

Welcome to the board!

If you could give us some more information and fully type out what is on the lab report, including any letters or words that are before the IgG and IgA, and the reference ranges, that will help us help you a little better, since those letters make all the difference in interpreting the lab tests.

That is puzzling.  I know a lot of us Celiacs eat ore idea, in fact I had some of their cube shaped hash browns last night.  Could it be how you are preparing it, like with a high fat meal, with undercooking of potatoes or eggs, something like that?  They do add an ingredient to their frozen potatoes to keep them from going brown which is called "DISODIUM DIHYDROGEN PYROPHOSPHATE", so perhaps it could be that individual preservative.  I know any potato product that is shelf stable is going to have something added or they will turn a hideous brown color.

Either way if you want to steer clear, if you ever want to make your own hash browns from scratch, the flavor beats out anything you can get from the frozen section.  Just takes a lot of work to grate the potatoes and squeeze the water out.  (Or pre-cook the potatoes in the microwave and cut into cubes before frying for the home style cube kind).

If you can verify it is gluten-free then eat up!  Things like that are just a heads up, since a lot of crab meats can have wheat in them.  The same thing is thrown out there with things like soy sauce- they do make gluten-free soy sauce and that is fine to eat as well, as long as you verify.  Awesome that you found gluten-free imitation crab meat... so can I come over for sushi night?  

Have you been tested for refractory celiac disease? The gold standard for a celiac disease diagnosis is an endoscopy with six or so biopsies after positive celiac blood tests. That is not always possible for various reasons for many folks. Those folks often find healing with the gluten-free diet. But if you are still struggling after being gluten free for five years, then I would recommend a GI consult.

Perhaps it is time to find out what is really happening inside your gut.

This is actually a very good recommendation.  I second this.