Is It Possible To Have Gluten Reactions Without Celiacs?

[meggo623]

Hello All! I am new here, but not a stranger to message boards. So my hollistic doctor diagnosed me with a gluten sensitivity/intolerance using Applied Kinesiology. I now believe this to be a bunk way of testing, but because my health is so poor (and I'm only 29), I decided to try living gluten free. I've had my ups and downs for several weeks, but I do feel better when I am off gluten. Over the weekend I decided to try my luck and I ate several items with gluten and didn't watch my diet as carefully because I was on vacation. Anyway, I suffered from what I think is glutenation. I felt like I had a pound of bricks in my stomach and I had BM issues. I also had serious burping and bloating.

Now, I have several questions:

1) Do these symptoms happen to all people who abstain from gluten and then add it back to their diet?

2) Should I get tested for Celiac? I need to make an appointment with my allergist soon anyway. But won't my results be bad if I am already abstaining from gluten?

3) What other reasons could there be for my bad reaction? Maybe it wasn't the gluten but something bad I had eaten?

Any help would be appreciated. Please let me know if you need more info! THANKS!

[zoogirl]

I'm new to celiac/gluten-free diet too, and have the same questions you do. I've suffered from chronic fatigue, pain, IBS, migraines, etc. etc. for years. I had an endoscopy last year that was inconclusive and now can't seem to get a doctor to run the blood tests for celiac. One nurse practitioner told me that I should just try the diet - if I felt better on it, stay on it. There's no other treatment anyway. If I didn't feel better, I could mark that off the list of possible causes. So that's what I've been doing for about 2 weeks. I felt noticeably better after just 3 days and am much worse today after eating a sandwich on 'normal' bread yesterday. So, I'm assuming whether it's officially celiac or not - gluten-free seems to help, so I'll stick with it. I do know that if you have the tests while you are gluten-free they can give a false negative. So that's something to keep in mind.

zoogirl

[sandsurfgirl]

Personally I don't believe in gluten intolerance. I believe it's all celiac but the tests are crap and not sensitive enough. There are so many stories on here of people who were nearly dying yet only one of the panel of 5 was off (like me. I literally told my husband if I die take care of the children when I was entering the ER.) Then there are those like my son who came up negative on the tests but when he went gluten free ALL of his symptoms went away and he started growing again after having stopped.

If you are reacting to gluten you have celiac in my opinion. And really does it matter if you are gluten intolerant or celiac? If I were you I would consider myself celiac and go gluten free for good. Celiac is autoimmune which means when you get that reaction from being glutened it's because your body is destroying your small intestine. If you cheat on the diet because you are unsure, eventually you will get really sick and believe me it's not worth it.

I think applied kinesiology is pseudo science, however it made you change your diet and now you have proof by being sick from getting glutened.

If you go to the doctor for blood tests or endoscopy you will have to eat a ton of gluten for 4 to 6 weeks and get really super sick to come up positive on those junk tests. Is it worth it?

My best advice is tell people you have celiac and if they ask lie and say it was on a blood test. Even future doctors. If you have a new doc they will never ask for the original blood tests to "prove" it. Nobody asks me for my original tests for thyroid disease. I have no clue where I would even track that down. If you say "I'm not sure, kinesiology, blah blah" they won't take you seriously and you open yourself up to naysayers telling you "Just one bite won't hurt you. I only put a little gluten in that." etc. Make your life easier and join the celiac club.

We tell everyone that my son was diagnosed by blood tests. He's 6 and he made the choice to go gluten free because he was tired of bloody noses, vomiting, diarrhea, coughs, asthma attacks (his asthma is gone now and no meds anymore), insomnia, etc. We were prompting him every time he vomited and got D by saying it was likely due to gluten. The last thing any of us need is somebody questioning our choice to make him gluten free. If he accidentally gets glutened it's immediate explosive D and sometimes he doesn't make it to the bathroom which means humiliation. I could care less about those garbage tests because obviously he has celiac. A non celiac does not poop their pants 20 minutes after eating gluten.

[meggo623]

Thank you for the insight. I guess if we were to debate it I would lean the other way and think that Celiac is rare and that everything else is an intolerance or allergies. I guess it seems weird to me that there is a whole autoimmune disease that functions on the idea that your body can't tolerate a specific substance. From what I know, this is the only autoimmune disease with this criteria, no? But, I'm a newbie with lots of theories and no facts. I am just trying to take it one day at a time.

When I first started I didn't notice a difference at all. My doctor told me that I probably didn't have celiac/intolerance. She said if I did, I would get really sick anytime I ate gluten. Well, then I talked to a friend and she said that I wasn't being strict enough with my diet. So then I really started to watch what I ate and low and behold, I'm feeling better...And now apparently, gluten makes me sick if I cheat and eat it!

Oh there's some emerging research about people who have gluten intolerances without being celiac:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[kwylee]

I have tested genetically intolerant to gluten, however all testing for Celiac disease shows no sign of it. I think it is important to note that in my case, my symptoms were mostly neurological. My body produces antibodies to fight the invader gluten if ingested. I do not have Celiac disease. But I will always react to gluten, so I do not eat it.

I believe it is critical that we fully understand and continue to research that gluten intolerance in the body manifests in different ways, not just resulting in Celiac. I think this is key in helping the multitudes of humans who react to gluten in any way.

[Salax]

I guess it seems weird to me that there is a whole autoimmune disease that functions on the idea that your body can't tolerate a specific substance. From what I know, this is the only autoimmune disease with this criteria, no?

Just to touch on what you said here, every auto-immune disease attacks something. For Celiac folks its gut because of gluten ingestion, for Hashimoto's disease suffers the immune system is attacking the Thyriod, for RA it's the joints, for Lupus (depending on what kind) attacks systematically or can attack different areas in the body and etc. There are several auto-immune diseases and they all have there area that they "go-after".

I guess in my mind I don't think the idea is so crazy because if we look at our diet for thousands of years and over time the GMO'd nature of crops...I think the body gets bombarded with chemicals and since we weren't designed to breakdown chemicals, are bodies start responding to the "toxins" we ingest and we develop auto-immune diseases and allergies. I think we will see more and more people developing intolerances to things like Soy (91% all GMO'd) and Corn (86% all GMO'd) and the other top allergens and GMO products. Just my take anyways.

[mommida]

In the case of Eosinophilic Esophagitus food or airborn "triggers" activate eosinophils. Eosinophils can not tell the difference from "normal" tissue and causes damage.

So Celiac disease and it's sister disease, DH, is not the only auto-immune caused damage disorder/disease. This type of damage is not an exact match for the definition of an ~allergy~ either.

[Molly R]

My best advice is tell people you have celiac and if they ask lie and say it was on a blood test. Even future doctors. If you have a new doc they will never ask for the original blood tests to "prove" it. Nobody asks me for my original tests for thyroid disease. I have no clue where I would even track that down.

Just a thought to keep in mind that what you tell doctors goes into their notes, and that information follows you around through the Medical Information Bureau. The data in MIB is shared by all life, health and disability insurance carriers-It helps underwriters determine how much people pay for coverage. When u apply for insurance, they get your medical records. Certain diseases in your record could make you pay more-sometimes a whole lot more-celiac is serious enough to do that. Or if there's enough data, could even make you uninsurable. So may want to consider before telling a new doctor something that may not be true and will go into your record.

[domesticactivist]

I think you've already got your answer.

For us, it's absolutely true. We're 99% sure our son has Celiac and that that rest of us don't, but that didn't stop the rest of us from benefiting from a gluten free diet. Here are excerpts from a post I made elsewhere (can't link due to board rules) that explains our family's changes after going gluten-free:

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We first decided to try a gluten-free diet to see if it would help with Jupiter

[mushroom]

Just a thought to keep in mind that what you tell doctors goes into their notes, and that information follows you around through the Medical Information Bureau.

It pays to get copies of your medical records occasionally, and correct any misinformation recorded therein.

I visited a neurologist who told me that the pain in my shoulder was coming from my neck (when I knew it wasn't) and referred me for P.T. to my neck (useless!). I got a copy of my records, and sure enough they said that I had complained of neck pain (not only had I not complained of it, I had never had any ). I wrote the good doctor a letter and informed him of this. It became important later when I had a neck injury in an auto accident and they would have said I had pre-existing neck problems. Oh, and the shoulder pain - thoracic outlet syndrome which I had to diagnose myself - wait!! it seems like I am always doing that

[Melstar23]

I was very sick with no diagnosis, and when I tried cutting out gluten I got better. After this I was tested, I am positive for the gene, and negetive on blood tests and gastroscope. Doctors say that I am not celiac and can eat gluten. Whenever I have gluten, even a tiny amount from CC, I get really sick now. The longer I am gluten free, the more strongly my body reacts if I have it. I have to live just like a celiac, completely gluten free. It may not be celiac, but a week of D, bloating, wind, abdominal pain, tiredness is not worth gluten.

[Molly R]

I was very sick with no diagnosis, and when I tried cutting out gluten I got better. After this I was tested, I am positive for the gene, and negetive on blood tests and gastroscope. Doctors say that I am not celiac and can eat gluten. Whenever I have gluten, even a tiny amount from CC, I get really sick now. The longer I am gluten free, the more strongly my body reacts if I have it. I have to live just like a celiac, completely gluten free. It may not be celiac, but a week of D, bloating, wind, abdominal pain, tiredness is not worth gluten.

You are so right. Same with me, positive for the gene but negative on blood and biopsy. In the same breath where she declared that I am not classified as having Celiac disease, my doctor (who is gluten sensitive herself) warned me to stay away from gluten in any form if I want to stay well.