AzizaRivers

I'm so sorry your caught was so ill, I hope that is the last time she ever has to experience something like that. If I were you, I would consider her Celiac for all intents and purposes; don't worry about testing, as you know she gets sick when she cheats and (I'm assuming, from what you said) is healthy when she does not.

Really, the cheating needs to stop. I'm presuming that since she was getting away with it even though you knew it was happening, you probably did not realize, just as she did not, that severe damage was being done. It sounds like maybe you should sit down with her and have a serious talk about gluten: no cheating, never, ever. She's risking even more serious problems than she had already endured. My guess is that the mom who saw her eat the pizza assumed that your daughter knew how to manage her own diet properly (I'm not blaming your daughter, it sounds like the two of you really just didn't know how bad it was for her to cheat). The mom probably thought she could have some gluten now and then; a lot of people don't understand the gluten-free diet properly.

Do her doctors think that the intussusception was due to gluten exposure? I would just want to make sure it wasn't caused by an additional problem that requires treatment. (I don't know anything about it).

It's totally possible that you have celiac anyway (my blood test was negative, too). You could push for a biopsy to double check, or you could just go gluten-free and see if it helps. Many of your symptoms do sound like classic celiac.

You do have a few symptoms, though, that aren't what I would typically associate with celiac. Celiac can certainly cause problems with intercourse and with your bladder, but those combined with your amenorrhea make me want to tell you to keep pushing your doctor to rule out any other causes of those specific symptoms. You do sound like a celiac, and if you go gluten-free and those symptoms disappear then that's great, but those sound like a few things I would want to keep an eye on.

In my opinion, IBS is a cop-out diagnosis. "We can't figure out what's wrong with you, so we're just going to tell you that your bowels are irritable." I'm surprised with your mouth ulcers and mucous membranes, etc. your doctor hasn't wanted to do a biopsy or hasn't thought about any other causes of those. Ulcers, tonsil stones, joint pain and headaches are not IBS symptoms.

You've had some great advice so far. I'll add to it with my own experiences.

You would be surprised how many people really don't have the faintest clue what's in the food their eating. Many people don't know what gluten is, and that's understandable. But I've had experiences with people who thought that I could eat white bread. "Oh right, you can't have wheat bread. But white bread is fine, right?" (Uh, no. It's still wheat. What did you think it was made of?). People will continue to surprise you.

I live with my partner's family, and I have since before I was diagnosed, which was over a year ago. His father, bless his heart, STILL doesn't understand what I can and can't eat. He doesn't prepare any food I would eat anyway and he's good about keeping things clean and separate so I don't worry about him glutening me, but just this morning he came home with a big bag of soft pretzels and offered me one. I just gave him "the look" (a playful one) and he said "Oh wait! You can't eat this, can you? I'm sorry, I always forget what has gluten in it." He not only forgets what has gluten in it, he also forgets what has flour in it, what flour is made of, etc. If your mom is anything like him, you may just have to learn to laugh and live with it. YOU know what you can eat, so you'll just have to be vigilant in making sure she doesn't accidentally gluten you, and keep gently reminding her what you can't eat.

I know this doesn't make it any easier...but at least she cares and tries. My own mother says things like "A little bit won't hurt you, right? Just eat the cupcake and move on with your life." When I refuse, she rolls her eyes and says "God, what a boring existence..." I don't know what it is about gluten intolerance that people can't seem to take it seriously.

I know you gave her a book, but honestly, if it wasn't my own problem, I don't know that I'd be interested in reading a whole book about gluten intolerance and everything that goes along with it. If it was my young child, I would, but it sounds like you're old enough that she knows you can be responsible for your own food. That's probably why she hasn't bothered to read it. I know it's hard when you're fairly new to gluten-free and someone keeps offering you food that you REALLY want to eat but know you can't. Believe me...I know it. But she loves you and she's trying, it's just complicated for some people. If it helps at all to know, it does eventually get easier to be around foods you used to eat. The other day, when I made a new pizza crust recipe and my partner asked me if it tasted "like a real pizza crust," I realized that I don't even remember what regular pizza crust tastes like. Mine tasted really good! You'll develop new tastes for the foods that you can eat. It gets easier, I promise.

Do you live on campus and/or rely on the school dining hall as your primary source of food? If so, you'll want to speak with someone of authority about food that is or can be made safe for your to eat. I had a lot of trouble with this and eventually moved off campus because I had a VERY limited selection of safe food, and what was "safe" sometimes made me sick anyway.

My school had a small cabinet and freezer with gluten-free bread, waffles and muffins, and some cereals and occasionally cookies. While I was grateful for the effort, they 1) had no idea how to choose GOOD bread, cereal, etc., 2) didn't understand that I couldn't use the gluteny toaster, sandwich press, and other things, and 3) rarely kept the thing stocked past the first few weeks of the semester anyway, which was frustrating.

Find out what kind of accommodations your school can make for a student with special dietary needs.

Here are things I had to consider:

-Even when I could get gluten-free bread, I couldn't have sandwiches made at the sandwich counter because there was absolutely no way to prevent contamination with the gloves, countertops, toppings, press, and everything. So if I wanted a sandwich, I had to make it from the salad bar and just thaw the bread in the microwave (ew).

-My school's dining service was completely awful at accurately labeling the food with ingredients. Half the time the labels never got put up, and half the time that they were, they were not the correct dish or the ingredients weren't complete.

-I couldn't have toast for breakfast because of the toaster situation.

-I always ran the risk of being contaminated by a serving spoon or something similar that hadn't been switched out.

-Certain things like french fries were not safe because they were fried in the same oil as breaded chicken and things like that.

-Even gluten-free cereal (like Chex) were not safe because I didn't know what other cereal had been in the dispenser before.

-The dining staff may or may not have any clue about keeping you safe. Mine didn't...hence the fact that I ended up moving off campus.

-You're going to have to become best friends with the floor manager(s). They will be able to tell you what the ingredients of something are and how it's made so you can determine if they're safe. I had one manager who was awesome, but they just weren't able to feed me.

Good luck.

First of all, welcome! I know how good it feels to have figured out how to help yourself get better, and to begin the journey. I'm also vegetarian and I'll tell you that veggie-gluten-free isn't very hard, especially if you've been veggie for awhile and are used to that.

I cannot recommend this blog enough: www.glutenfreegoddess.blogspot.com.

Her recipes are fantastic, and she's also vegetarian with several other food allergies and intolerances, so her recipes always have suggestions for substitutions.

There's a link at the top of her blog to extra help on going gluten-free for new celiacs (Open Original Shared Link). It's got a lot of excellent tips and recommendations when you feel a bit overwhelmed by all the can't-haves.

Also, make sure that if you're sharing a kitchen with gluten-eaters, don't use their wooden spoons, cutting boards, or old/scratched pots and pans or skillets. You'll also need your own toaster and certain condiments that can be contaminated by gluten (butter, peanut butter, jam, etc.). Make sure you have a safe space for your food and keep the kitchen very clean to avoid contamination.

The easiest thing to do would be to cut out all dairy for about a week, and then give him something straight (like yogurt or a glass of milk; not cheese as some cheese are lower in lactose and wouldn't give a clear result) to have and see if that does anything. If he continues to be sick during the week before, then it might be more complicated.

Of course, that test, even if "positive" wouldn't tell you whether the problem was with lactose or casein. Not that it really matters, as the treatment is the same: no dairy (or reduced dairy depending on how he tolerates it).

Now, if the problem is a milk allergy (different than intolerances to lactose or casein) then you probably wouldn't want him to have it at all. You can take him to a doctor and ask how they recommend you test him, but the elimination test above is very simple and doesn't require any doctor's trips, and you could just go from there.

Did your lab sheet show you what the "normal" ranges are? Maybe someone with more experience than me would be able to say that that looks like what normal usually looks like, but I do know that different labs use different numbers, so your should have told you what the normal ranges were so you could see where yours fall.

Stomach grumbling IS a symptom of celiac and gluten intolerance for some people, but it's also a vague phenomenon that can happen for a lot of different reasons. Do you have any other health issues or symptoms that might be indicative of a problem? Most people who are found to have gluten problems report more symptoms than just stomach noise.

It's possible that your noise might be caused by gluten, but no one here is going to jump the gun and tell you that's the reason. Have you talked to a doctor about it? Requested testing if that's what you think it might be?

In the meantime, I recommend that you continue on with your normal diet. Testing can only be accurate when you're eating a full-gluten diet, so you would probably want to make sure you've finished all potential testing before trying the diet. Otherwise, you'd have to go back on gluten for several months if you ever wanted to be tested (lots of reasons you might)...and you may not want to do that, if it turns out that you feel better without it.

YES. The other night I was in a night class and it was someone's birthday. Seeing as none of us have had birthday classes since grade school, someone made a cake for her and brought it in. She said it was gluten-free because she knew of two of us in the class who couldn't have gluten and decided to buy a gluten-free mix.

I took one bite of that thing and SWORE she had lied to me. It was the best gluten-free cake I'd ever had. I ate it, but very nervously, and asked her after class what mix it was. She said it was the Betty Crocker gluten-free one and I complimented her, laughing about how nervous I had been because it was good. I've heard questionable things about that mix, but I've fairly sensitive and I never got sick after eating that cake.

I'd say you can call him diagnosed, based on what the doctors are doing and have told you. I would give them a call though, and just check to see that it's been put in his medical records. The reason for this is that when he starts school, it may be helpful to confirm that it's "official" if he needs any accommodations in the classroom or cafeteria--stuff like that.

You might need him to go 100% dairy-free for now. It's awesome that he's doing so well, but a month really isn't that long in terms of the healing of his gut damage. As you probably know, an endoscopy could tell you how well he's healing but sometimes that's not the route you want to take for various reasons. Since the enzymes that digest lactose are made in the villi and his probably are still at least blunted, and he's still having some little issues, I'd take away all the diary for now. I know it's tempting not to because he needs to gain the weight, but it could be doing more harm than good for right now. He'll probably be able to take it back (slowly) in a few more months.

Is your whole house gluten free? Plenty of celiacs can successfully remain healthy in a house with gluten, but not all of them can. You could have his blood tested again in a few months to see if his antibodies have gone down, and if they haven't then he's probably getting gluten somehow. In the meantime, do all you can to prevent CC. For example, when you butter his toast, did someone else use a gluten-bread-crumby knife to put butter on their toast before that? If that's a risk, he should have his own butter dish (and peanut butter jar, and jam jar...etc.) to prevent cross-contamination that way. You'll also want to keep his food away from old wooden spoons and seasoned pots and pans because they have residual gluten in them.

The only way we could know if someone is eating gluten without damage is for them to have regular endoscopies...maybe every month or so. Sounds expensive, and not worth it.

Gluten remission is extremely rare and I would imagine the trouble one would have to go through to find that out, and find out if it stays, would not at all be worth the food.

Just as a thought, if she's been tested for allergies has she also been evaluated for asthma? It's not always caused by allergies so just because they don't think she has allergies doesn't mean it couldn't be asthma. I know you're not really asking if advice on that in this thread but I just figured I'd mention it in case it sparked anything. Especially because if it turns out it IS some kind of asthma, that could increase the chances of it being aggravated by anesthesia (particularly if they use a mask to administer part of it, which they sometimes do for small children to make them sleepy before the needle).

I had a celiac friend as a child, and her parents always just sent dinner, dessert and breakfast with her to make sure she had something safe to eat. She was welcome to eat any of our food as she knew how to read labels and knew what wasn't safe, but she had her own food to make sure she had meals. If it was a birthday party sleepover, they would send the same food (she'd have pizza if we were having pizza) but it was just whatever for other nights.

Her parents never expected that we accommodate her, but my parents eventually started just having gluten-free meals when she was over.

At one point, my dad (who loves to cook) got really excited and printed out a long list of unsafe ingredients off some website to assure her and her parents that he could cook her food safely. Haha! While some of us here still would not feel comfortable with someone else preparing our gluten-free kid's food, she lived in a mixed household to begin with and would just check the labels of things he used to cook for us. Worked out fine.

Welcome to the board! I'm curious how you were diagnosed with your allergy? I've heard conflicting information on "gluten allergies" and some people say you can't be allergic to gluten, as it's a protein. I don't know enough about that so I will just say that I'm wondering how you were diagnosed with that.

Either way, it seems that you have figured out gluten makes you sick, which is a feat in and of itself, so I congratulate you for having found a piece in the puzzle of getting your health together!

If you don't want to go through with a biopsy, you could consider yourself gluten intolerant anyway--you just won't be formally diagnosed with celiac. For many people this is fine: they just understand that I need to be 100% gluten free and don't feel a need to get a formal diagnosis. It's totally up to you and whatever you feel is right. A lot of people have trouble getting an "official" diagnosis of an intolerance because it's debated which testing is the most accurate, etc. The name of the testing your doctor suggested was removed because we're not supposed to mention specific medical companies on here (it can be considered advertising, though you did not mean it to in this case).

So, in summary, you don't really NEED to have any other testing done if you don't want to have it or if you don't "need" it for any other reason (sometimes people need a firm diagnosis for their family to be able to support them, or children need one to get school accommodations). If you are comfortable just knowing gluten makes you sick, just don't eat it.

IrishHeart has given good information, so I'll just add one more thing.

This is just a thought I had as no one can tell much from what you've posted, but where exactly was the pain? Gallbladder pain can often be sharp like that, and is also often exacerbated by greasy foods. Your gallbladder is in your upper right quadrant. You would feel that pain in your right side, about 2 inches up inside of your ribs.

I don't know your history or whether you've been diagnosed with celiac or not, but gluten in celiacs can cause gallbladder issues, as can many other foods for us, as we tend to have sensitive digestive systems and often develop other issues even when gluten free. If that's the location of your pain, you might want to mention it to your doctor so that he or she can get you checked out.

I'm so sorry you're so sick. Let's look at your symptoms. Celiac can manifest itself in a lot of different ways.

*Dizziness

*Tiredness

*Geographic tongue--you have a textbook example of it (do a Google search if you're curious)

*Mucus in stool

*Nerve problems (that's the tingling and vibrating you feel)

*Brain fog

*Nausea

*Menstrual problems

*Anxiety

Sores on fingers

All of the symptoms I put a star next to are ones that are known to be highly correlated with Celiac. You will find people on here who have those same symptoms. The only thing I don't know about is the sores on your fingers. They could very well be related, I just have never seen that before.

Your negative blood test, as you seem to know, doesn't mean much. Plenty of people text negative and go on to end up having Celiac anyway. You need to bring this up at your next doctor's appointment (make one now if you don't have one coming up). If your doctor doesn't want to do a biopsy, find another doctor who will.

It's important to remind you, though, that even if you suspect Celiac (I do, from the little I know), you must continue eating a high-gluten diet until after your testing is finished. If they do a biopsy they'll be looking for villi damage, which they won't necessarily find if you stop eating gluten and your villi begin to grow back.

It's possible, but I would think that if she was going to throw up from the gluten, she would have done it sooner than 5 days after the fact. Reactions can be delayed, but in this particular case I'm more inclined to think she may have had some kind of virus. I know your daughter is young and little kids have funny ways of reacting to being sick. I would guess that she's had something going on since she started with the headache and everything.

Do you have any other reason to believe she had glutenous cereal besides the fact that she wasn't feeling well? As I said, some people have longer time-frame reactions but I would have expected the vomiting to come sooner.

1. Just for the record, you do not necessary HAVE to have "the genes" to have celiac. Many of us on here are living proof of that. We may have the intestinal biopsy to prove our diagnosis, but not test positive for the few genes that doctors are sure are linked with celiac. In fact, in different parts of the world, different genes are recognized! We have not gotten that down to an exact science yet, and maybe we never will. Also, as stated by someone already, 1/3 people have the most common genes associated with celiac, but that doesn't mean all of them have celiac. But because you have it, that increases the chance that your children will.

2. I cannot believe there are people in your family who don't want to get tested because they are scared of the gluten free diet. They would rather live in ignorance, I suppose, as their bodies continue to attack their tissues and somewhere along the line they are high-risk for many types of cancers? Of course that's assuming they would have it, but still...it's highly irresponsible to not want to know just because you don't want to have to do the treatment. Celiac is serious.

I filed a complaint on CBS's website. You all should too. Here's what I said:

"I have a medical condition called Celiac Disease that causes my immune system to attack my small intestine if it detects even trace amounts of gluten in something I eat. I was repulsed when I heard the gluten joke in 2 Broke Girls. I have been made seriously ill at restaurants when I was not taken seriously by the server, and I rarely eat out because gluten intolerance is not taken as seriously, as common as it is becoming. I do not appreciate TV shows perpetuating the widespread discrimination against people with medical diets or food allergies. Would a joke about sugar-free foods for a diabetic have been funny? Not to mentioned the fact that the joke also was discriminatory against people with eating disorders, which may have been worse because media is often a major factor in eating disorders.

You have lost me as a viewer, and I suspect you have also lost the 40 some thousand who suffer from Celiac disease or other forms of gluten intolerance. I doubt the 8 million sufferers (mostly young girls) of eating disorders in the US found that joke very funny, either."

Okay, thanks guys. So what I'm getting is that my symptoms could possibly be related to food, and they could be nerve issues, but neuropathy itself indicates actual nerve damage, which only a specialist could test me for? I'm not particularly interested in that, I'm just interested in getting to the bottom of my issues. I'm either getting gluten sneaking in somewhere, or I have another allergy/intolerance that needs to be discovered.

Thanks for the thoughts.

I'm a little confused. You said you don't have celiac disease and just went gluten-free because of "reviews," but then you said you wondered if you are extra hungry because celiac disease makes it hard to absorb nutrients. So are you saying that you think you may have celiac? You didn't mention any symptoms.

I was very hungry when I first gluten free because my body was starved for nutrients. I agree with skylark that you probably are hungry because you are not eating the rich foods you used to eat. If you just went gluten-free for fun and you don't have any health issues or celiac symptoms, I'd advise you to go back to eating gluten. In moderation, of course. If you went gluten-free because you are trying to resolve a health issue, then you should resume eating gluten and go to see your doctor to be tested for celiac. You would need to be eating gluten to have accurate test results.

As said above, it's not a fad diet and there's no reason for it to be.

I'm so sorry you're going through this, and that you don't have the support of your family. And I promise I won't think negatively of your husband. I had a lot of trouble getting my mother to understand and it didn't make me love her any less, it's just hard. I hope he comes around for you. It's tough because it sounds like a lot of his concerns are financial? I'm going to offer up a few ideas that might help, indirectly.

Do you think it would help him understand if you were able to be diagnosed? I get that if you went through testing and it was negative that might cause some problems with him...but perhaps if you got a doctor to back you up, it might help. Canker sores, by the way, are VERY common in celiac disease patients. I get them too. There are also many experts who have found correlations between Down Syndrome and celiac. You don't say why your son was on a gluten-free diet (is it the same child who has Down?), but for some reason, rates of celiac have been found to be higher among people with Down. You might want to consider having your children tested as well as yourself.

A colonoscopy would not have been able to tell your doctor anything about celiac. Celiac patients are commonly diagnosed with IBS before they get the real answer, because IBS is a kind of diagnosis where the doctors think "I don't know what's wrong with you, so we'll call it IBS and call it a day." If you wanted to me tested, you would need to find a willing doctor, who would first run a blood antibody test and then usually an endoscopy with intestinal biopsies afterwards. Some people stop after a blood test if it's positive, but many do the biopsies then to evaluate the villi damage.

I know this will probably not help you convince your husband, but if it makes you fell any better...gluten-free does not have to be as expensive as some people make it. It is expensive if you simply replace all the foods you normally eat with gluten-free packaged versions, and if some people have money to do that then it's their choice, but many of us (including myself) don't. I eat lots of fruits and vegetables, and I buy things like beans (dry), nuts, rice, millet, etc. in bulk to save money. I try not to eat too many baked goods because it's just not good for you, but I occasionally treat myself with a loaf of homemade bread or a batch of cookies or cupcakes. Since I make them myself, I get a lot more mileage out of the money I spend on special flours. And I make them last by baking sparingly. It's something to get used to, but it's healthier and cheaper that way. There are many, many foods that are naturally gluten-free.

All in all...I really hope you are able to get things sorted out and get yourself healthy. Almost all of us on here know what it's like to be sick for a long time and be longing for an answer...then you finally find an inkling and it can be very frustrating when you cannot get support from your family. We're here for you, though, whatever that's worth.

Some of you may have seen a few posts of mine here and there recently related to trying to figure out why I'm feeling sick again. I have had several ulcers at the same time lately, as well as mild stomach issues (nothing like if I was blatantly eating gluten, but still enough to make me feel "yucky" all day long) and just feeling down.

Today while I was at yoga, I was bent down forward, and my feet and ankles started to feel like I was standing on something that was vibrating. It was more than tingling, it was really a fast vibrating feeling. Over about 45 seconds to a minute it just got worse and worse until it was almost unbearable and I was about to sit down or say something to my instructor when it stopped all of a sudden with a warm rush. Now this has happened to me before--mostly while I am either at yoga or at dance at my body is feeling the strain of exercise--but not quite this bad. Because it usually happens during exercise, it never occurred to me that it was anything other than my body just "being weird." But since I've been feeling sickish anyway, it crossed my mind that what I know of neuropathic symptoms is that they feel like a tingling or vibrating and often happen in the feet.

I never got that before diagnosis. But does this sound like it might be related to the food issues I'm trying to figure out? Or does it sound like it is more likely to have to do with the exercise? Any thoughts are appreciated...I'm just trying to get to the bottom of this.

Hmm. Yeah, it sounds like many of us are in the same boat as me, or were and still don't have everything figured out. Thanks for sharing though, everyone.

I'm wondering if those of you with other intolerances tend to get the same symptoms you get from gluten, or if you have a whole different set of symptoms for other things.

I have lately had a lot of canker sores (I have 4 right now) and I don't usually get those without it being food-related. I've been having mild stomach issues similar to my gluten ones, but on a much smaller scale. I'm not incapacitated like I would be if I was eating regular gluten food or anything, but I am uncomfortable. I do live in a mixed house (like with my partner's family so it's out of the question to ask everyone to change) but I am extremely careful. So it's possible I'm having CC, but I also wonder if maybe it's another intolerance. I've been gluten-free for almost a year now and I know it's common for new ones to show up 6-12 months after diagnosis and diet change.

I started a food diary this past week to log my symptoms along with whatever I ate. I guess if it's another intolerance that will help me figure it out. But if it's just CC from cookie sheets/pans (I don't have my own), crumbs, etc. then I won't know from that. If it is CC, I'm almost totally sure it's not from a product but rather from sharing the pots and pans, getting gluten crumbs near my food, and perhaps things like eating rice someone else has made, in which they used butter from the non-gluten-free butter dish.