Gluten/ at home testing

jrc2127

Wondering if anyone has done the at home test by “ImAware” that tests for celiac antibodies. I suspect I may have a gluten intolerance not necessarily celiac and will talk to my doctor if symptoms persist but I’m curious if anyone has done this test. Also, if you are gluten free but not officially diagnosed with celiac, do u find it helps ur symptoms? If so, which ones? Thank u!

hipari

Hi there. I’ve been tested for celiac (bloodwork, not a home test) but don’t have it. In my case the diagnosis went through elimination: I don’t have lactose intolerance or celiac, so my doctor told me to try the FODMAP diet. Since it works, the diagnosis is irritable bowel syndrome (IBS). The fodmap diet leads me to eat gluten free and avoid certain other foods, and it helps with pretty much all my old symptoms (bloating, being gassy, randomly alternating constipation and diarrhea).

I highly recommend you talk to your doctor asap and get tested, because the test looks for antibodies that only show up if you’ve been eating gluten regularly. In my case I had already figured out gluten-free diet works better for my tummy, and had to switch back to eating gluten for two months before taking the blood test to confirm it’s not celiac. I’ve never been so uncomfortable in my life. I was a bloated, stinky balloon of farts and couldn’t go anywhere without a bathroom nearby. I also gained weight because I took advantage of the situation and ate all my favorite treats.

HeidiCooksSupper

Here's a link to an article that reviews the reliability of ImAware: https://www.beyondceliac.org/research-news/at-home-test-for-celiac-disease-gets-scientific-review/

zebasschick

i thought i was celiac, but turned out i'm sensitive to wheat - the good news there is i can eat barley and rye (which have gluten), just not wheat.

i had symptoms from eating dairy at one point that were very similar to some people's gluten issues. taking lactaid helped a lot.

moonangel12

I had a blood test years ago, but had already cut it out of my diet so we both knew it wasn’t going to be much good. I cut wheat out when my exclusively breastfed daughter was diagnosed with severe food allergies (had to make DRASTIC changes) and felt so much better! I was in process of being tested for MS, textbook symptoms. Surprise, they disappeared when I cut out wheat! (Essentially GF at the time because it was easier just to shop by those “rules” and packaging). The handful of times I have tried eating anything significant, like a piece of toast, it triggers a neurological response - MS symptoms, depression, shuts my already slow digestive system down for a week+, and I am a miserable mess. Loosely diagnosed with Gluten Ataxia. My food allergic child has had genetic testing for Celiacs, but it came back negative.

jrc2127

moonangel12 wrote: »

I had a blood test years ago, but had already cut it out of my diet so we both knew it wasn’t going to be much good. I cut wheat out when my exclusively breastfed daughter was diagnosed with severe food allergies (had to make DRASTIC changes) and felt so much better! I was in process of being tested for MS, textbook symptoms. Surprise, they disappeared when I cut out wheat! (Essentially GF at the time because it was easier just to shop by those “rules” and packaging). The handful of times I have tried eating anything significant, like a piece of toast, it triggers a neurological response - MS symptoms, depression, shuts my already slow digestive system down for a week+, and I am a miserable mess. Loosely diagnosed with Gluten Ataxia. My food allergic child has had genetic testing for Celiacs, but it came back negative.

Thank you so much for sharing your symptoms. Mine are not so much bowel related as they are with depression/anxiety and some numbness/tingling. I’m curious what my test results will me and if a gluten free diet will reduce these symptoms.

moonangel12

jrc2127 wrote: »

moonangel12 wrote: »

I had a blood test years ago, but had already cut it out of my diet so we both knew it wasn’t going to be much good. I cut wheat out when my exclusively breastfed daughter was diagnosed with severe food allergies (had to make DRASTIC changes) and felt so much better! I was in process of being tested for MS, textbook symptoms. Surprise, they disappeared when I cut out wheat! (Essentially GF at the time because it was easier just to shop by those “rules” and packaging). The handful of times I have tried eating anything significant, like a piece of toast, it triggers a neurological response - MS symptoms, depression, shuts my already slow digestive system down for a week+, and I am a miserable mess. Loosely diagnosed with Gluten Ataxia. My food allergic child has had genetic testing for Celiacs, but it came back negative.

Thank you so much for sharing your symptoms. Mine are not so much bowel related as they are with depression/anxiety and some numbness/tingling. I’m curious what my test results will me and if a gluten free diet will reduce these symptoms.

Definitely worth a shot! I remember the first time I ate bread, my husband came home and within minutes asked what I had eaten that day (he knew I was adding stuff back in). I told him, and in a gentle, not-hateful way he said “don’t.” My emotions took that big of a hit. It was BAD. (I was also newly pregnant and dealing with a very unstable toddler (no joke, she’s 9 now and we are looking at potential bipolar and/or a type of epilepsy) and two other young children so it was a rough season in life anyway). If you don’t notice changes you can just go back to eating how you were, no biggie.

Whole30 is a wonderful 30-day elimination diet to try and find potential trigger foods (with guidance on how to reintroduce foods). I KNOW sugar and dairy are majorly inflammatory for me. I feel GREAT not eating them, but my will power sucks so eventually they crept back in and have a strong hold on me now I struggle to get adequate protein and things like cheese and yogurt are a good chuck for me (sugar is easier for me to cut out than dairy).

There are some people that can eat anything without negative consequences, there are others that can’t. I have found, those that can don’t understand that a simple diet change can make a huge difference to the overall health and well-being of a person. No fault of their own, but you might get push back from some.

zebasschick

there are so many things that can cause tingling/numbness including some medications and diabetes. has your doctor done a full physical on you?

MikePfirrman

I've been told I have all the classic symptoms of being Celiac. I haven't been tested and don't plan on it. I get really, really sick if I eat gluten and avoid it at all costs -- even small things like shared fryers.

The reason why is, for one, I don't want to reintroduce gluten into my diet. I'd be sick for a week. The other reason is I'm self-employed. Even though my wife never took any drugs for Fibromyalgia, once she had it on her medical record, though she doesn't suffer at all from it any longer, she was denied health insurance (we finally got a rated policy). I don't want to also be rated, though I avoid gluten altogether, and I'm perfectly healthy.

As far as reactions -- I used to eczema all over my back. I also had stomach issues and bloody stools regularly. Now, that has all cleared up and I feel so much better.

I quit gluten to support the wife. Then around a year later, we got gluten in Mexico. My rear end broke out in blisters. Was very painful to sit for days. From what I'm told, that's an autoimmune reaction and pretty typical. If I get a tiny bit of gluten, I might not get the blisters, but I do get a massive migraine that night and it doesn't go away for sometimes a day or two. I also feel like I've been run over by a truck the next day.

Once you eliminate it and get any at all, you know it.

My wife, though she's recovered from Fibromyalgia now, can eat it a little bit and she'll be fine. I can't. Not a bit. I won't even do soy sauce or things with minimal amounts in it. Not worth it.

My wife was extremely sensitive, at one time, to gluten. If she had it, her stomach would swell immediately. Like she was six months pregnant. Her stomach fills with water and is like a drum. She might feel slightly bad the next day. Over time, though, I think it caused stomach issues for her. She had IBS for years. That's all gone. She is fairly strict on gluten and cow dairy (something else she's allergic to).

This will sound ironic. I don't believe in eliminating foods you don't have to. I don't think it's good for you to do that. She eliminated all dairy for a few years and started having histamine responses to red wine and nuts on occasion. Once we went back to sheep and goat cheese (and more fermented foods), those occasions went away for her.

Things that might help with symptoms -- avoiding dairy for a while, colostrum, cranberry extract, fucoidan. All of these help heal the gut. Also, some do better on sourdough bread.

slmcgee1

i just got tested and found out that i am not celiacs however i do have a strong intollerance to gluten as well as many other things i eat daily. It has been difficult, but they had me do an elimination diet (give up all on my list for several weeks) and I have to say my symptoms did get better. I had body aches and a constant headache while all the gluten and other stuff left my body. I am now just starting to get over all that and feeling great. I also lost weight pretty rapidly while eliminating since my body was so inflammed from all of it. Wish you luck on your journey

moonangel12

MikePfirrman wrote: »

I've been told I have all the classic symptoms of being Celiac. I haven't been tested and don't plan on it. I get really, really sick if I eat gluten and avoid it at all costs -- even small things like shared fryers.

The reason why is, for one, I don't want to reintroduce gluten into my diet. I'd be sick for a week. The other reason is I'm self-employed. Even though my wife never took any drugs for Fibromyalgia, once she had it on her medical record, though she doesn't suffer at all from it any longer, she was denied health insurance (we finally got a rated policy). I don't want to also be rated, though I avoid gluten altogether, and I'm perfectly healthy.

As far as reactions -- I used to eczema all over my back. I also had stomach issues and bloody stools regularly. Now, that has all cleared up and I feel so much better.

I quit gluten to support the wife. Then around a year later, we got gluten in Mexico. My rear end broke out in blisters. Was very painful to sit for days. From what I'm told, that's an autoimmune reaction and pretty typical. If I get a tiny bit of gluten, I might not get the blisters, but I do get a massive migraine that night and it doesn't go away for sometimes a day or two. I also feel like I've been run over by a truck the next day.

Once you eliminate it and get any at all, you know it.

My wife, though she's recovered from Fibromyalgia now, can eat it a little bit and she'll be fine. I can't. Not a bit. I won't even do soy sauce or things with minimal amounts in it. Not worth it.

My wife was extremely sensitive, at one time, to gluten. If she had it, her stomach would swell immediately. Like she was six months pregnant. Her stomach fills with water and is like a drum. She might feel slightly bad the next day. Over time, though, I think it caused stomach issues for her. She had IBS for years. That's all gone. She is fairly strict on gluten and cow dairy (something else she's allergic to).

This will sound ironic. I don't believe in eliminating foods you don't have to. I don't think it's good for you to do that. She eliminated all dairy for a few years and started having histamine responses to red wine and nuts on occasion. Once we went back to sheep and goat cheese (and more fermented foods), those occasions went away for her.

Things that might help with symptoms -- avoiding dairy for a while, colostrum, cranberry extract, fucoidan. All of these help heal the gut. Also, some do better on sourdough bread.

My daughter gets the blistered bottom after wheat exposure - it’s awful 💔 she had to endure a long car ride after an accidental exposure at a family meal, I get so bad for her! We tried diaper creams and powders just to try and get her some relief.