We have been going through the celiac diagnoses with our little T1 guy right now. Thanks for sharing those stats.
When we got the blood work for celiac done and had a positive result on the antibodies test. Around the same time he had loose stools (and some throwing up) and we noticed our little guy slowly stopped eating his favourite foods that had gluten in them. We also had a lot of random lows after meals, which was likely caused by the GI issues. Anyhow - since we have had a couple convincing celiac antibodies tests done (basically a 98% chance of celiac) and he won’t eat a lot of gluten food anymore (his choice), we are probably going to give the scope/biopsy thing a miss and continue on with the no gluten diet.
To all the celiac folks on this site - WOW living gluten free is expensive.
IgA count? I’ve wondered about this. I have CD, and a family member recently got tested and her IgA was on the low end but her DMG-IgG was very high. Her doctor told her it was just inflammation, but I’m not so sure. I was expecting a diagnosis based on her symptoms.
So sorry Liam’s GI issues persist. We’re dealing with going on a month now of odd stools for my 3yr old (2 weeks after a tummy bug), probiotics aren’t making a difference. It’s making me feel very paranoid about celiac.
Right now, we’re only setting up an appointment to meet with the GI specialist. After we talk, and he draws some labs for himself which I’m sure he’ll want to do, we’ll decide the direction we want (or need) to go. I certainly don’t want him to be put under - ever…anesthesia is a scary thing…fine line between the “here” and the “there”. We’ll talk to him and go from there. He may want or need to put him under to fix the umbilical hernia and it may be done during this time if this is necessary…either way, him being put under scares the ■■■■ out of me.
Glad the appointment went well. Good luck with the celiac testing!
I avoided wheat for several years because of eosinophilic esophagitis, but more recent allergy tests have come back negative so I’ve been eating it again to a) see if it bothers my esophagus and b) get an accurate celiac blood test (the last test I got I was avoiding wheat, so it wasn’t accurate). I’m getting the test tomorrow, along with the IgA test, and will be glad to get it done because with eating low-carb it’s actually extra work to incorporate gluten into my diet. Now that I’m typing this, I’m wondering if eating wheat is perhaps the reason my blood sugars have been so crazily insane the past few months. Hmmm.
Dietary changes are hard at first, but over time they become part of life. The hardest part of living with dietary restrictions (in my case food allergies) isn’t eating at home, but rather the eating out and social aspects. In the end, though, it’s worth it to feel better and stay healthy!
Well, it is when you have 5 other brothers that eat normal foods (including the proven benefits of Milk)…we go through 10 gallons per week (sometimes more). Many of the things that people can’t eat who have Celiac are perfectly good foods - in fact, a good majority are super healthy food choices. If he does have this, it really will mess up the synergy of what our entire house eats…and I don’t like him not being able to have staple things, like Milk. But if he can’t have it, we’ll just have to make whatever changes are necessary…but nothing about this will be an easy transition, for any of us.
Well, to my knowledge milk doesn’t have gluten (at least I’ve never seen any with gluten, but I’m allergic to milk, so who knows, they add some weird stuff to food these days!), so you wouldn’t have to worry about that. There are gluten-free versions of literally every gluten-filled food imaginable (bread, pasta, muffins, cookies, crackers, pancakes, cupcakes, pizza crust, etc., etc.). So you wouldn’t really have to cut any foods out, per se, just replace them with safe versions of the same food.
I grew up with anaphylaxis while my brothers and parents had no food allergies. They all ate foods I was allergic to, and still do to this day, but take careful cross-contamination precautions if around me or preparing food I’ll be eating. I know some families aren’t comfortable doing that, though, and will just eliminate that food for everyone.
But hopefully this test will come back negative, so you won’t have to worry about any of this! Either way, I hope you’re able to figure out why Liam is having stomach troubles so it can be remedied.
You’re so right…I was thinking Lactose Intolerance. lol. I would blame it on my being tired, but I hate to say it’s just normal for me. I meant wheat instead of milk. He eats Wheat bread because he doesn’t eat white bread like his brothers because it’s better for him. He also loves hot dogs and ice cream and I think ice cream has gluten?
Also, in terms of eliminating healthy foods, that varies by person. If a food is causing someone’s body to react severely, then clearly it’s not healthy for them even if it’s perfectly healthy for most people. Most people benefit from eating dairy or potatoes, but for me those foods cause potentially life-threatening reactions, so clearly for me there are no health benefits.
Yeah, we will adapt either way – at the end of the day it’s about what’s healthy FOR HIM. Totally agreed. We will do whatever it takes to keep him healthy, as everyone here will do for themselves and their loved ones.
White bread would also be made out of wheat, so whether he’s eating “whole wheat” bread or “white” bread, they’re both made out of wheat. But, as I said, there are gluten-free versiosn of bread (many, many kinds) and most other foods imaginable. One of the biggest transitions for you guys would probably be having to read ingredients labels on absolutely everything. I don’t eat anything without first checking both the ingredients and nutritional information.
To my knowledge, ice cream doesn’t usually contain gluten. Gluten is found in grains like wheat, barley, rye, and some others.
Yes, some flavors (and brands) do, usually obvious ones like with cookies or something (though Blue Bell at one point had wheat in their dutch chocolate - WHY?!).
I’ll advise you as I advised my family member when she was getting tested - try not to borrow trouble (worry) before you know for sure. There are a lot of things that can affect the gut, so until you know for sure it’s gluten-related, just try not to think about it. That being said, going gf IS hard at first, especially with the cross contamination considerations, but it’s doable, and you get used to it, and it becomes not so hard. @Jen is right that they have substitutes for just about everything nowadays. Honestly, I find being dairy free a whole lot harder than gluten free!
I think that’s what has kept me sane through all the medical issues that we’ve had with all our kids - I try not to stress things. The way I see it is…stressing isn’t going to fix anything at all and it may break a few extra things. So we just roll with whatever punches come our way.
Except for those obvious ones with cookies pieces in them.
We seem to also have a mild version of lactose intolerance (in addition but unrelated to Celiac) that appears to come and go over a period of months. Odd. But the lactase pill right before eating dairy seems to do the trick. Then it may disappear for six months where the lactase pill is not needed.
@Jen, In terms of Gluten, absolutely agree with you. Wheat, Rye, Barley. The hidden one is Malt that is in many foods you might not think of as gluten. In terms of soups, many soups use wheat as a thickener which again you might not think of as “gluten” type of soup. Candy gets tricky. Especially on Halloween where you might get individually wrapped items with no food label. Lots of looking on in the internet. And some of the candy changes from year to year.
There are a couple of other “food terms” that show up in ingredient lists that appear to be gluten at first glance but with some study prove to be actually non-gluten. For example Wheatgrass is gluten free (although that is debateable by some). Wheat starch is allowed in foods labeled gluten free.
The easy items are the ones which list “Wheat” an an allergen.
And the foods labeled “Gluten Free”.
Which actually accounts for a huge number of foods.
Then you get the ingredient lists which at the bottom state something about “shared equipment” or “in a facility that also processes wheat” or something similar. So you have to make your own decision about those sorts of foods.
Edit: Oh - and I forgot about Oats. Our GI doc advised to avoid Oats unless specifically labeled Gluten Free. Not that Oats contain gluten from a plant point of view - as they do not. But apparently the way Oats are picked or transported or processed or something involves significant risk of cross contamination such that non Gluten Free oats are an unreasonable risk. On top of that, some people with Celiac are simply never able to eat Oats (even Gluten Free) without problems.
It might actually be related. Does it happen after she’s been glutened? Lactase enzymes are produced on the tips of your villi, which are what is damaged when glutened. I’m permanently lactose intolerant, it seems - can handle only the tiniest amounts in goat/sheep dairy without a pill - but if I’m glutened, I have to completely avoid any and all dairy for a couple weeks until my gut heals.
With a negative celiac panel it might be worth discussing with your doctor a comprehensive food allergy test referral. Gluten seems to get all the attention nowadays but there’s an awful lot of other things that can cause food allergies still too…
The problem is most (if not all?) true food allergies don’t cause lower GI symptoms - those are generally food intolerances, and the available testing for food intolerances is exceedingly unreliable, so the best way to find them is through an elimination diet - stripping your diet down and then slowly adding back in foods to look for a reaction. Doable, but not fun at all.
Most true food allergies are quite obvious (eat the food and break out in hives half an hour later sort of thing), but GI issues can be a symptom of food allergies. However, generally large panels of foods aren’t tested for, because even testing for “true” food allergies (IgE antibodies) is not reliable and is prone to lots of false positives and negatives. Usually, allergiests go on the basis of testing and a history of reacting before making a diagnosis. In know, at least for me, my allergist refuses to test for a “panel” of foods, but he will test for specific foods if I come in with some idea of what I think I might be reacting to (and my situation is more rare and complicated than most). Generally, a food allergy is caused by wheat rather than gluten (and there are other common ones, but any food can cause a food allergy). Keeping a food journal may not be a bad idea, because it may help narrow down if there’s a correlation between a particular food and symptoms.