Can You Be Gluten Intolerant Without Having Celiac?

[passionfruit877]

Ok, I figured out that I was gluten intolerant a while back when no body could tell me what was wrong with me. I saw several doctors over 2 years who all kept telling me I had IBS and that pretty much I would just have to deal with the constipation. Its a long story, but it ends up with me trying the gluten free diet and it worked. My doctor has been supportive of this diet, but, told me he doesn't think i have the celiac symptoms.

Now, I looked up Celiac disease. I have growth stunting (4' 11'' at 22!), I'm underweight, I have extremely sensitive skin (I got a rash from suntan lotion?), I was constipated for 2 years, and of course I'm gluten intolerant. To me it seems like a good chance.

I'm fairly sensitive. I can usually tell if I got gluten before I'm done eating. My stomach blows up like a balloon.

Why I'm asking though is because he told me that he doesn't think I have Celiac and that it won't hurt me to eat gluten. He told me something about IBS and that my gluten intolerance should be gone in a few years. But after he told me that we went to my favorite hibachi grill, and I got fried rice and shrimp (with soy sauce, and maybe butter). I took a few gluten ease pills and enjoyed the food. When went to Wal-Mart afterward and my stomach hurt so bad we had to leave, and when I got to the car I was dizzy and seeing spots. Then I started dry heaving. I wanted to cry because now I don't know what to think. I have since vomited twice after eating (I didn't even do that when I got the flu). Gluten just makes me feel "off". I am also lactose intolerant. Could I have such bad symptoms and not have Celiac?

-Jess

[passionfruit877]

Another question, can I be tested even if my doctor doesn't think I have it?

[Lisa]

It's obvious that you have some level of sensitivity or Celiac Disease. Below is the test to request/demand from your doctor. You must continue to digest gluten until you have exausted your testing.

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Good luck and I hope you find your answer.

[mushroom]

Jess, I don't think it matters much whether they can diagnose you as having celiac disease or not. It is obvious that it does not agree with you and that you should not eat it. This is a case where diagnosis does not matter. If your finger kept getting burned when you placed it on an element, would you keep putting your finger on it even though you were assured that the element was not turned on? I think not. So what the doctor says here is pretty much irrelevant. Gluten does you harm and you should avoid it.

There is a school of thought that says that people such as yourself have just not done enough harm to yourself from gluten to be diagnosable and that if you keep eating gluten long enough you will develop the antibodies and the villous atrophy. There is another parallel school of thought that says that there are genes that are not celiac genes but genes predisposing one to gluten sentitivity/intolerance. Which sensitivity/intolerance is treated in the same way as celiac disease--the gluten free diet. Whatever the case, it is important for you not to consume gluten. Your body cannot process it and it makes you sick. Enough already.

On re-reading your post, when your doctor says you don't have celiac disease, is it because he has tested you for it and you tested negative, or just because he "thinks" you don't have it and you don't "look" like you have it. Unless you have had the blood work for celiac and the endoscopy with at least six biopsy samples and tested negative on both, after you have been on a gluten-filled diet for at least six weeks, no one can say you do not have it; and even if you do not have celiac disease you *are* gluten intolerant and should stop killing yourself by eating it.

Lactose intolerance often accompanies celiac because of the destruction of the villi in the small intestine. This is where the lactase is produced which digests the lactose sugars in the milk. If you are lactose intolerant as well it is a good bet there could be villous damage.

You DO NOT need a doctor to tell you to stop eating gluten. This is something you can do all by yourself and save yourself a tremendous amount of grief, and with any luck avoid developing any of the other autoimmune diseases that are caused by gluten intolerance.

So you can resume eating gluten for six weeks and get the testing done, or listen to your body and stop eating it. It depends on how important the diagnosis is to you. Good luck in making this decision.

[passionfruit877]

Thank you both for replying. I am back on my gluten free diet and feel back to normal now. Mushroom, I was not tested for Celiac. He didn't think I had the symptoms to be tested, which at first was a relief to me, until I tried to eat gluten again and regretted it. I think this whole thing bothers me so much because for the past 2 1/2 years I was really sick, and all it took to fix it was to stop eating gluten. I want to be able to call it something. I don't want to feel like I'm guessing, even though I've pinpointed the problem. I guess I want to hear a doctor say "You have this," so I'll have some peace about it or something. There is a good chance in my mind that I could have it. I don't know if I was ever diagnosed with "failure to thrive" when I was little but I was so so small. By 15 I was still only 4' 10'' and 85 pounds.

Someone told me, "Why don't you just assume you have it then?" Perhaps that is good advice.

All I know is that gluten does make me sick. And my reactions are so bad that I don't doubt I have it anymore. I have had fingers go numb, my chest and throat swell up, and I got dizzy from standing in Subway too long one time (my husband was getting something).

I just feel so mentally frustrated about this. It is nice to have positive support on this board.

I was looking into the gene test. I don't know if this can diagnose Celiac but if I have the gene I think I will definitely be more sure, and I want to know if it is something I can pass on.

[mushroom]

If your doctor absolutely refuses to test you, you can (a) find another doctor, or ( do stool testing through Enterolab (you will find plenty of info on this site about it). You do not need a doctor to order it, and they will test for gluten, lactose, casein, soy (and some other) intolerances, gliadin antibodies (which is what show up in the blood work of a celiac panel). fecal fat (a measure of digestive enzyme capacity in your gut) and the celiac genes. I believe this testing costs around $400. The genetic testing will not tell you if you have it, but it will tell you if you have the U.S. recognized genes predisposing you for celiac, and/or for gluten sensitivity.

[passionfruit877]

So the stool test (ha ha good thing I'm not constipated anymore) can tell you if you have Celiac? I understand you have to be eating gluten to get the blood test, which honestly would suck. Do you think insurance would cover the stool test?

[mushroom]

So the stool test (ha ha good thing I'm not constipated anymore) can tell you if you have Celiac? I understand you have to be eating gluten to get the blood test, which honestly would suck. Do you think insurance would cover the stool test?

No, it cannot tell you if you have celiac, only if you are producing antibodies to gluten which could represent celiac disease or gluten intolerance. The stool test is usually sensitive to gliadin for 6 months or so even if you are not consuming gluten. If you carry either of the recognized celiac genes it would probably indicate that it was celiac rather than GI. Yeah, good thing you're not constipated if you want to go that route I believe a lucky few have had their insurance cover Enterolab testing, but for most I think the answer is probably no. (Your *doctor* did not order it!)

[passionfruit877]

I see. Well, I think it may be one of those things that would be worthwhile to do. I could always see what my doctor would say about it, but if not, oh well. Are you completely self diagnosed? It seems like a lot of people on here are.

[mushroom]

Yes, I am one of those who have not had testing of any kind. Doctors diagnosed IBS, fibromyalgia, hypochondria (wanted to refer me to psychologists/psychiatrists) so eventually I stopped talking about it at all. (I was not one who was incapacitated by my symptoms.) But I did have a family who all suffered from GI symptoms, a sister who went gluten free (she was wasting away at the time and has an officially diagnosed celiac daughter) so it was not a foreign concept for me. But actually I quit gluten in the hopes of curing my rheumatoid arthritis (another autoimmune disease associated with celiac), because I knew someone with anykylosing spondylitis --another rheumatoid disease--for which gluten free was recommended/ Those of us who self-diagnose do so because no one thinks to test us for it. And once we are gluten free, and it works, as you are finding out, we will not go back to eating it in order to be tested.

[ciavyn]

Amen, mushroom. Many in my family have severe GI problems, and I grew up with them. Since going gluten free, I feel amazing, and it's not worth it to me to worry about it further. I'm certainly not going to go back to feeling awful and publicly embarrassed simply to get a test to confirm what my body has already told me.

[Lisa]

All I know is that gluten does make me sick. And my reactions are so bad that I don't doubt I have it anymore. I have had fingers go numb, my chest and throat swell up, and I got dizzy from standing in Subway too long one time (my husband was getting something).

It sounds like you have a gluten ALLERGY as well as a sensitivity or Celiac.

[passionfruit877]

It sounds like you have a gluten ALLERGY as well as a sensitivity or Celiac.

You know, I had thought about that. I have quite a few sinus allergies related to pollen and various grasses and plants, and what is wheat but another plant? I actually asked my doctor about it the last time I was there and he said I would have known it before now if I had an allergy, but I don't know about that. It sucks because he doesn't know my history, perhaps that would convince him more than current symptoms. My family seemed to think it made a lot of sense. The first time I saw him I told him I was gluten sensitive. That second time I actually went to ask him if I could have an allergy or Celiac disease. He told me no on both. The reason I suspected an allergy was because my reactions are so quick (usually within 15 minutes) and the chest tightness and numbness usually let up in about an hour (my GI symptoms last about 1-2 days though). I know I am gluten intolerant, but I was worried about Celiac disease because I knew that meant wheat was really hurting you.

[purple]

Mushroom, thanks for your great explanations!

Passionfruit, I have 2 dd's 18/21. The oldest has been gluten-free for 1 1/2 years. Her symptoms were extremely bad menstrual cycles, bloating, dizziness now and then, stomach aches, internal bleeding a couple of times per year when very stressed and a few other minor things. She has not been tested except the doc told her no gluten.

The youngest gets an itchy head, rash around the hairline and keratosis pilaris. She went gluten-free about 6 months ago. She has not been to a doc.

Both know they will get symptoms if they have gluten. They try not to cheat (but they do). They live together so I can't watch them. I do make them gluten-free foods when I can.

We do not know of any relatives that are celiac or gluten-free.

We all know they should not have gluten and will watch out for their children one day.

The youngest made homemade gluten-free waffles yesterday! YAY!!! And she is vegan too.

[jny1179]

I suffered for almost 15 years until I discovered the gluten free diet. I was told for a long time that I had IBS, or stress, or it's all in my head. I was officially diagnosed with Crohn's disease last year after a colonoscopy. It took me years to get Celiac tested because the docs said my symptoms weren't "typical" but there really is no such thing as a "typical" Celiac. I have not had a small bowel biopsy but I do not have the two recognized genes and my bloodwork was normal (borderline). I cut out gluten and it makes a HUGE difference, I also cut out all dairy, I react more severly to dairy, more like an allergy, but gluten is the cause of my constipation/diarrhea cycles.

It sounds to me like you most definitely either have Celiac or a full blown wheat allergy. Your doc should give you those tests! If he won't, find another one. If you really need that solid proof (I totally understand, I'm the same way) then keep pushing. I went through many docs before finding one that actually listened and put me through the proper tests.

Even now though, after diagnosis, he doesn't believe that diet has anything to do with Crohn's, even though I've proved it time and again going on and off the gluten-free diet. But no matter what he says, I know it works and I will stick with it permanently this time.

The moral of the story - Keep pushing for testing!! Find docs that will listen to you! You know you're body better than anyone! :)

[Jean'sBrainonGluten]

I can relate to the rash from suntan lotion and the dizziness in Subway. I don't shop in stores with bakeries unless I have absolutely no other choice.

Medical doctors can be so frustrating and most of them know zilch about celiac, much less gluten sensitivity.

The issue of testing depends on you. I'll tell you my story and then ask some questions.

I had numerous allergies and thyroid problems, plus my mom and uncle both died of bowel cancer. I eventually developed fibromyalgia and was taking vitamin B12 and D3. The doctor (the only really smart doctor I've ever had, who has since retired at 86 - sigh) put me on an elimination diet and I reacted strongly to wheat, which shocked me. So I did the wheat free diet and my headaches, allergies, and pain got better. I found that I could occasionally have some wheat without retriggering everything (I thought) and I never did celiac testing because I didn't want to eat enough for the challenge since I knew I would hurt.

Well I have family members who thought I was just being a diva and really gave me a hard time about not eating their wheat-in-everything cooking and I started doubting myself. I was also eating out and thinking grilled meats and salads with only a few bread crumbs were okay. And then......I started to feel worse and worse, I was struggling with dizziness and headaches,,,,,I finally got a monster headache and throbbing pain and throbbing pulsatile tinnitus and dizziness, stumbling, nausea, light sensitivity, sound sensitivity, eyes wouldn't focus, losing peripheral vision, plus seizure like leg jerking when I tried to go to sleep. They ordered a brain MRI and told me I had no tumor, but small nonspecific white matter lesions that were probably microvascular ischemic changes - doctorese for heading for a stroke. Fortunately they did a carotid ultrasound and even though I'm 51 there was no evidence at all of arterial blockage, which meant they were wrong with the idea of classic prestroke.... I remembered I had seen something about gluten affecting the brain and low and behold several online brain MRIs of patients eventually diagnosed with celiac looked like my MRI. I have what they call celiac white matter lesions, even though I test negative on the IgA and IgG tests (so the doctor says though he hasn't sent me the precise results). People with these spots have shown symptoms that mimic epilepsy, MS, dementia, and Lou Gehrig's disease but most of them seem to get better after a year or two on a strict gluten free diet. I'm getting better with gluten free eating but it will be a long haul.

I had a chance to improve my health when I got the results of the elimination diet but I pretty much blew it and made myself really, really sick. Years ago when I got the results and started the diet I learned a few things about gluten but I didn't keep learning - I wanted to move on with my life, or I might have learned that most grilled meats in restaurants are dusted with flour to avoid sticking, and even a few crouton crumbs are too many. I didn't understand cross contamination and I didn't trust my own body's reactions enough to stay vigilant and keep learning.

Here are my questions - do you need a diagnosis to be able to be diligent and stay assertive for yourself, especially even after you start feeling better? If, in your heart, you know you need a diagnosis then push, push push until you get it. You should know that the stool and saliva tests are not well regarded by mainstream doctors so if you want their sympathy and blessing you 'll have to go through the gluten challenge and classic test thing. Even a genetic test showing risk genes won't convince the hard core guys - they've all been trained to believe celiac is very rare (1:800). And if you do those tests and instead have wheat allergy or gluten intolerance the tests still won't show you those.

Here is a lengthy video that explains some of the differences among wheat allergy, gluten intolerance, and celiac

There is also a shorter and lower tech video from the Gluten Intolerance Group that explains many of the critical issues.

Sorry so lengthy....

You have to decide for yourself what you need to be able to stay diligent and keep yourself healthy. Hope that is helpful.

[passionfruit877]

I can relate to the rash from suntan lotion and the dizziness in Subway. I don't shop in stores with bakeries unless I have absolutely no other choice.

Are these signs of an actual wheat allergy, or do Celiacs respond like this as well?

As a response to your question, now I am very good about my diet. At first it was hard because I doubted everything. Doctor's weren't really listening, and its hard to keep yourself convinced when a doctor is telling you something different. My doctor told me he didn't want to call what I had Celiac because I didn't have the symptoms. He told me eating gluten would not hurt me and that my intolerance would go away. And he told me that a wheat allergy would have been discovered by now.

But is that true? And I realize I don't have reactions like someone with a peanut allergy, but could a wheat allergy be more like sinus allergies? What I mean is, I have had bad allergies since I was born. I was told they thought I had mild asthma at first. I was on Claritin, I used to get sinus infections, I had allergies year round, I was on those steroid nasal sprays like Flonase, the works. Now I'm not even taking the Claritin. I first though I had an allergy because I get very immediate responses. Like, I made a sandwich for someone, and absentmindedly ate a small piece of turkey with my fingers. I got bloated within minutes (and I don't really think I get bloated, no gas or anything, its like my stomach swells from the bottom all the way up to under my ribs. Its weird.). That was the only reaction I got thought and it went away after a few hours. I also get sneezy when people cook toast, or pizza. I also used to have bad gas and diarrhea as a baby, or so I was told, and the bad gas continued into my teens (lol that is embarrassing, but I'm not kidding. It was like, every meal.)

I see your point though, and I don't think I have to be diagnosed with anything to follow the diet. Not anymore. I get too sick. That doesn't mean I wouldn't still like some proof.

I would like to know more about wheat allergy, like the symptoms, or personal stories.

[gaingus]

"My doctor told me he didn't want to call what I had Celiac because I didn't have the symptoms. He told me eating gluten would not hurt me and that my intolerance would go away. And he told me that a wheat allergy would have been discovered by now."

Wow, I know you have seen a lot of Doctors and trust me many of us have. My first advice passion is to get a new primary care provider/manager. I have yet to hear that gluten intollerance goes away with any reasearch I've done. When I was diagnosed, my doctor smiled and informed me that I have a life long diagnosis. I think he was just as relieved as I was to have figured it out.

As far as the info you are looking for on a wheat allergy, you need to see an allergist, I don't really agree when your doctor said that if you have an allergy, it would have been noticed by now. When they started trying to figure out what was going on with me, I had allergy scratch testing done and found out I have an allergy to feathers and I was 30 at the time. They never seemed to bother me so it caught me by suprise that I was allergic to them.

Anyway, back to your current question, the research I have done, said that people with wheat allergies have the same symptoms as people with gluten intollerance or celiac disease. They even have the usual food allergy symptoms that we don't have such as "asthma, eczema (or atopic dermatitis), and, rarely, anaphylaxis." There is a possibility that you can have both celiac/gluten intollerance and a wheat allergy.

Obviously being on the gluten-free diet helps you, stay on it until you find someone to do the testing. As far as the rash realted to sun tan lotion, I can not use anything that has hydrolyzed wheat protien in it, if I do, I break out in a really nasty weaping rash.

[StacyA]

"My doctor told me he didn't want to call what I had Celiac because I didn't have the symptoms. He told me eating gluten would not hurt me and that my intolerance would go away. And he told me that a wheat allergy would have been discovered by now."

Wow, I know you have seen a lot of Doctors and trust me many of us have. My first advice passion is to get a new primary care provider/manager.

I also think you need to get a new doctor. You're not going to trust that doctor anymore, anyway - so you may as well switch.

[passionfruit877]

My first advice passion is to get a new primary care provider/manager. I have yet to hear that gluten intollerance goes away with any reasearch I've done.

Yeah, that statement threw me off too. I was just thinking, well what if it doesn't go away? He seemed very set that what I have is IBS, which he said will go away in a few years, and take my current food intolerances with it I guess. The he suggested Prozac, lol. Perhaps he doesn't know a lot about food intolerance?

[gaingus]

I also think you need to get a new doctor. You're not going to trust that doctor anymore, anyway - so you may as well switch.

I ended up getting a second Gastro doc that figured everyting out, and I am glad I did. I found out there were a lot of abnormal tests that I was originally told by the first one I had was "normal".

[gaingus]

Yeah, that statement threw me off too. I was just thinking, well what if it doesn't go away? He seemed very set that what I have is IBS, which he said will go away in a few years, and take my current food intolerances with it I guess. The he suggested Prozac, lol. Perhaps he doesn't know a lot about food intolerance?

Umm......... IBS doesn't just go away either. Just like Celiac/Gluten Intollerance, it can be controlled, but it doesn't go away. I agree that he may not know a lot about food intollerances. It sounds like a good idea to just go on the diet, if it makes you feel better go for it, but if you do, you need to stick to it.

[AndrewNYC]

Absolutely. Certain sensitivity levels do not seem to indicate much. If anything, my impression is that the majority of classic celiacs are only allergic to gluten. Take that and perhaps dairy out of their diets and they do well. My impression of people who are merely gluten intolerant is that it is a symptom of some poorly defined stomach problem they have which predisposes them to food sensitivities that can take a long time to master.

Ok, I figured out that I was gluten intolerant a while back when no body could tell me what was wrong with me. I saw several doctors over 2 years who all kept telling me I had IBS and that pretty much I would just have to deal with the constipation. Its a long story, but it ends up with me trying the gluten free diet and it worked. My doctor has been supportive of this diet, but, told me he doesn't think i have the celiac symptoms.

Now, I looked up Celiac disease. I have growth stunting (4' 11'' at 22!), I'm underweight, I have extremely sensitive skin (I got a rash from suntan lotion?), I was constipated for 2 years, and of course I'm gluten intolerant. To me it seems like a good chance.

I'm fairly sensitive. I can usually tell if I got gluten before I'm done eating. My stomach blows up like a balloon.

Why I'm asking though is because he told me that he doesn't think I have Celiac and that it won't hurt me to eat gluten. He told me something about IBS and that my gluten intolerance should be gone in a few years. But after he told me that we went to my favorite hibachi grill, and I got fried rice and shrimp (with soy sauce, and maybe butter). I took a few gluten ease pills and enjoyed the food. When went to Wal-Mart afterward and my stomach hurt so bad we had to leave, and when I got to the car I was dizzy and seeing spots. Then I started dry heaving. I wanted to cry because now I don't know what to think. I have since vomited twice after eating (I didn't even do that when I got the flu). Gluten just makes me feel "off". I am also lactose intolerant. Could I have such bad symptoms and not have Celiac?

-Jess

[mushroom]

My impression of people who are merely gluten intolerant is that it is a symptom of some poorly defined stomach problem they have which predisposes them to food sensitivities that can take a long time to master.

(italics added)

I would suggest that the rest of your sentence is oxymoronic with the use of the term "merely". Merely, being to minimize, whereas in fact gluten intolerance can have an equally devastating effect on one's life. And, as you say, it is a poorly defined problem so there's no way of knowing how serious or deleterious it is. That which cannot be defined cannot be quantified.

[melblondin]

I would like to know more about wheat allergy, like the symptoms, or personal stories.

I also think you should find a new doctor. I was diagnosed with a wheat allergy two years ago by a scratch test as well as by a little injection under my skin and I was also taken by surprise since I've been eating wheat my whole life. The way that he explained it to me was that our bodies are like buckets and they can fill so far with allergens before they start to overflow resulting in typical allergy symptoms. I know that I've always been allergic to cats, dogs, pollen, dust, and basically anything outside, but the way I understood it was that my tolerance to those things might get stronger once I eliminate wheat from my diet because the wheat that I was consuming (and I did eat a lot of it) was causing my bucket to always be "overflowed." I am in the process of doing genetic testing to rule out the possibility of celiac disease as well, but the biggest symptom that I associate with the allergy is the exercise-induced allergy attacks. Once I cut wheat out of my diet for a while and then reintroduced it, I had an asthma attack within minutes of eating it and without having exercised. There are other symptoms that I have as well, which is why I'm looking into celiac, but the asthma occurs within minutes of ingestion and to be a true allergy, they typically look for symptoms that occur within the first 15 minutes or so of consuming the allergen. I will try to post/explain more later, but my 3 year old is on my lap and making it very difficult for me to concentrate at the moment