Gluten-free And Frustrated

[caek-is-a-lie]

Hi, I'm new to this forum and new to avoiding gluten. I'm getting kind of frustrated with a few things and wondered if anyone had any suggestions.

First of all, I have a family history of Celiac. 2 immediate family members were diagnosed formally with Celiac years ago. I had a blood test but it came back negative so I was told I didn't have it. That was about 10 years ago and no one told me to eat lots of gluten before hand so I have no idea if I was eating it much at the time. But I think it definitely runs in the family.

Recently I was diagnosed by a naturopath with wheat allergy and started eating gluten free. Except I didn't get it all out until about a month ago. Since then I've had a couple of accidental ingestions of it and the symptoms have been terrible. Horrible pulling intestinal cramps 6 hours afterwards, D, and seizures waking me up out of a sound sleep 12-15 hours after eating gluten. I've had these seizures for years and it's not epilepsy. I never knew what they were and now it seems it's always been gluten. I was always told it was psychogenic and was never taken seriously about it. I don't know how I could fake it in my sleep! But I think I've really confirmed it's gluten allergy.

So I'm trying really hard to be gluten free and avoid all of the other foods I'm allergic to. I can't even eat rice. There's not a whole lot left for me to eat and I'm still having stomach aches from milk now. I feel like I just want to stop eating completely. But of course I can't.

I would love to go to the Dr. and ask for some sort of definitive testing like biopsy or genetic test, but my naturopath doesn't seem to think its necessary since we already know I can't eat it. But I want legitimacy...something on paper. I want to be taken seriously. I also don't know what to call this. I don't feel like I can call it Celiac until I have a positive biopsy, but gluten sensitivity sounds so vague and I always have to explain it to people. But I have a long history of asking for help from doctors for legitimate problems and getting ridiculed and humiliated, and I don't even have the copay right now, so I get nervous even thinking about going. Every time I've brought up food allergies with my PCP, he ignores me or tells me that an allergy doctor is the last place I should go.

I tried to sign up for a clinical study on genetics so I could find out my HLA typing for free, but they already had all the people they needed for it.

What do I do? Just eat gluten free and move on with life? Pursue a diagnosis? I don't even know what that will get me besides peace of mind. And what it it's negative? I still can't eat gluten, but then I wouldn't even have the hope of being legit in the eyes of the medical community and then I'd get even less help. And I need that, personally, but do I need that to be successful in getting help for this? I'm so frustrated and I'm just not sure what to do. I'm going crazy trying to figure out what has gluten and what doesn't. I have to sit and google every ingredient or brand & product every time I sit down to eat. It's driving me mad. But even the tiniest bit makes me sick. Maybe I should make an appointment directly with a specialist and forget the family doctor. Has anyone tried that?

[burkev]

Hi, I'm new to this forum and new to avoiding gluten. I'm getting kind of frustrated with a few things and wondered if anyone had any suggestions.

First of all, I have a family history of Celiac. 2 immediate family members were diagnosed formally with Celiac years ago. I had a blood test but it came back negative so I was told I didn't have it. That was about 10 years ago and no one told me to eat lots of gluten before hand so I have no idea if I was eating it much at the time. But I think it definitely runs in the family.

Recently I was diagnosed by a naturopath with wheat allergy and started eating gluten free. Except I didn't get it all out until about a month ago. Since then I've had a couple of accidental ingestions of it and the symptoms have been terrible. Horrible pulling intestinal cramps 6 hours afterwards, D, and seizures waking me up out of a sound sleep 12-15 hours after eating gluten. I've had these seizures for years and it's not epilepsy. I never knew what they were and now it seems it's always been gluten. I was always told it was psychogenic and was never taken seriously about it. I don't know how I could fake it in my sleep! But I think I've really confirmed it's gluten allergy.

So I'm trying really hard to be gluten free and avoid all of the other foods I'm allergic to. I can't even eat rice. There's not a whole lot left for me to eat and I'm still having stomach aches from milk now. I feel like I just want to stop eating completely. But of course I can't.

I would love to go to the Dr. and ask for some sort of definitive testing like biopsy or genetic test, but my naturopath doesn't seem to think its necessary since we already know I can't eat it. But I want legitimacy...something on paper. I want to be taken seriously. I also don't know what to call this. I don't feel like I can call it Celiac until I have a positive biopsy, but gluten sensitivity sounds so vague and I always have to explain it to people. But I have a long history of asking for help from doctors for legitimate problems and getting ridiculed and humiliated, and I don't even have the copay right now, so I get nervous even thinking about going. Every time I've brought up food allergies with my PCP, he ignores me or tells me that an allergy doctor is the last place I should go.

I tried to sign up for a clinical study on genetics so I could find out my HLA typing for free, but they already had all the people they needed for it.

What do I do? Just eat gluten free and move on with life? Pursue a diagnosis? I don't even know what that will get me besides peace of mind. And what it it's negative? I still can't eat gluten, but then I wouldn't even have the hope of being legit in the eyes of the medical community and then I'd get even less help. And I need that, personally, but do I need that to be successful in getting help for this? I'm so frustrated and I'm just not sure what to do. I'm going crazy trying to figure out what has gluten and what doesn't. I have to sit and google every ingredient or brand & product every time I sit down to eat. It's driving me mad. But even the tiniest bit makes me sick. Maybe I should make an appointment directly with a specialist and forget the family doctor. Has anyone tried that?

[burkev]

We sometimes make the search for answers in our life very complex....dramatic....deep ......sensitive when the answer is usually very simple, direct and right under our nose. I would encourage you apply the old joke..."doctor , it hurts when I do this"....to which the doc replies" then don't do that"

I'm sure there are those who will take me to task for by passing the medical community....one of my children reminds me each time I talk to her!!

Life(on earth) is too short to make it difficult...it's hard enough when one is healthy . Approval or confirmation from doctors seems futile because of the large inconsistency in opinions. Yet I can see where you might also view a medical confirmation as another tool in your toolbox of taking care of yourself....but my suggestion is to believe in yourself first ...trust your instincts....in any event YOU are the one who validates a doc' diagnosis.....heck even if you broke an arm only you can tell them what pain number you have ...nobody can look and say"probably 5 on a 10 scale".

For me the decision to go gluten-free without a diagnosis by a doc was based on this......the end result is the same with or without a doc....gluten-free is the cure and that is the bottom line....... right under my nose. As for the general practicioner vs. a GI specialist.....I'm a believer in specialists. When my daughter got sick with leukemia.....self diagnoses worked in a sense....she knew something besides mono was going on and sought out a specialist...it got us 3 years more of life with her. Listen to what your body is telling you..............be a good listener.

At first I saw no reason for me to do any diagnostics at all......refer to the first paragraph......now I'm considering doing gene testing.....for the benefit of my three children. In closing I hope you come to a place of peace, acceptance and contentment,

Take care, God Bless!!

kevin

[ShayFL]

I understand wanting an official Dx. But sadly, for many of us, that never comes. So you have to move on and keep on gluten-free because you know in your heart and body that is the answer. You get sick when you eat gluten.

Otherwise, you will need to eat gluten for a good 3 months and lots of it to get a biopsy. And it is true, even then, there are false negatives.

Only you can decide if you want to do that. There was one person in here who did decide to eat gluten and take the tests/biopsy. She ended up in the hospital several times and couldnt even walk after a month or so on gluten. I do not know what happened to her. I believe she stopped coming in here. I hope she made it.

[serebus]

I sympathize. I am going through a similar circumstance/dilemma. My sister was diagnosed about 2 years ago with biopsy and blood tests. I was having similar problems and ignored her advice for 2 years while my health problems skyrocketed. Slowly after doing a food diary and experimentation, I came to see the logic and have eliminated gluten (gluten-light 3 weeks and then gluten-free 16 days). I feel much better - the bloated gut seems to be fading, the aches and pains are gone, no longer having the brain fog problems, energy I haven't felt since my 20s. However, I do wish I had been tested earlier this year when the problems were at their peak. My sister still wants me to get the endoscopy with the theory that damage will still be visible and I may if my doctor goes along with that. I keep deciding to start eating gluten again to see if symptoms return and then get tested when they are bad. But somehow because things are going so well, I am unwilling to go back into that experience to get the positive test result. But at the same time, I worry about proceeding forward without the test result. Moving forward seems risky - moving back seems undesirable. A friend at work who is celiac recommended I just keep moving forward, which is probably what is going to happen. Thanks to everyone for their postings. At least I am glad that this information is out here on the web. I have been going through a nightmare of sorts for about 4 years (and possibly longer). Good luck!

[coldnight]

I don't have any diagnosed celiacs in the family, but I suspect it some. At any rate, I stumbled upon a gluten free diet and suddenly felt better. I talked with the doctor and decided I did not want to eat gluten for 2 months and THEN see if it shows up in blood or not. So, I am taking a genetic test, in hopes that will rule it out, or give me risk potential. If it's high, I'm just going with it... it's not definitive, but I don't think it's worth it. Your seizures sounds terrible, I for instance, when eating normally, have to take a huge amount of opiates and anti-anxiety medicine (lomotil, Klonopin, codeine) etc.. I can step down off that stuff very quickly after being gluten free for a couple weeks. So, to me, it's just not worth it to go back, the transition is brutal from needing that much medicine to not needing it. If gluten free works, then I will stick with it, even regardless of the genetic test, just because it works and I have had "severe" IBS for 9+ years.

So, I dunno, I would like a definitive answer too, like why have I been so miserable for all this time, not even able to work for years at a time, but in the end, all that really matters is feeling well and moving on. (The only real difference for me, is if it's celiac then I have to be far more careful than if it's a sensitivity, but at this point, it's not worth the risk either way, if 100% gluten free works, then that is how I will stay.)

[sbj]

I'm getting kind of frustrated with a few things and wondered if anyone had any suggestions. ... I've had these seizures for years and it's not epilepsy. I never knew what they were and now it seems it's always been gluten. ... I can't even eat rice. ... I would love to go to the Dr. and ask for some sort of definitive testing like biopsy or genetic test

Hi Cake is a lie:

One thing I would recommend that I don't think anyone would disagree with is to read up on celiac disease, gluten intolerance, and wheat allergies. A well-respected book is Celiac Disease: A Hidden Epidemic by Peter Green , M.D. I didn't buy the book - I checked it out for free at the library. Please make a visit to the library a top priority.

Just because you tested negative 10 years ago doesn't mean you wouldn't test positive now. But the gluten challenge thing is a big problem. We can't tell you what to do - if gluten makes you feel horrible then how could I suggest you do a challenge? I would recommend an endoscopy and colonoscopy to rule out other conditions. They'll be much more affordable under a copay rather than paying the full amount. Perhaps you could make the copay a Christmas gift to yourself? My heart goes out to you. I hope you get in a position soon to afford good healthcare, it's really important.

I would suggest you not get hung up on a celiac diagnosis or with genetic test and biopsy. I think your first step should be to determine whether this is celiac disease to begin with. The fact that you can't eat rice could point to severe intestinal damage; this would be important to look at with endoscopy and/or colonoscopy. The endoscopy is not only for diagnosing celiac - it is also to make sure something else more serious isn't going on.

1. If your problems aren't caused by celiac disease then it would be a good thing to know what is causing them. You should realize that lots of symptoms resolve temporarily when stopping gluten. Going gluten-free can resolve some symptoms for a while but you still might have something else. Be careful and don't assume that celiac is your only problem.
   
2. If you do have celiac disease then you need to be looked at by a doctor and tested for a few other things - such as low bone density and nutritional/vitamin deficiencies or anemia. This is important so please try to get these further tests that celiacs normally get. If possible, it's important that you not stop at the diet and move on.
   
3. The endoscopy and colonoscopy not only look for other conditions besides but they also serve as a baseline for future testing. In a year or two you might want to have these tests redone to see if the gluten-free diet is helping improve the condition of your gut.
   

Please be careful and see your intern or specialist if at all possible. That doesn't mean you have to get back on gluten but please let them know you believe you have celiac disease. They may recommend other tests even without a gluten challenge.

[DarkIvy]

A lot of people have already posted great advice, but I just wanted to say hang in there!

A lot of us here, myself included, don't have a diagnosis. Like you, celiac does run in my family and I tested negative on both the biopsy and the bloodwork.

Like someone else has already pointed out, just because you tested negative in the past doesn't mean you will this time. Also, since you've only been gluten-free for a short time, and not entirely with the mistakes you've made, if you could get some bloodwork done ASAP, you have a fighting chance of getting a real diagnosis that way. An endoscopy is a good idea too, even if you stay gluten-free for the endoscopy. This will allow them to check for anything else that might be wrong.

Keep in mind that both the bloodwork AND the endoscopy for celiac are NOT completely accurate. There are many cases of false negatives but almost none of false positives. Just because the test results are negative does NOT mean that you don't have it.

In the beginning I worried about not finding the support I need in the medical community because I don't have an official diagnosis. However, I've been lucky enough to have a physician who understands that celiac is hereditary and the tests are inaccurate and she treats me like she would any of her regular celiac patients. Whenever I've seen other doctors or specialists, I simply explain that I am gluten free and gluten intolerant. Gluten intolerance doesn't need to be diagnosed and other doctors have taken this seriously when I bring it up. If they ask for any elaboration, all I have to do is explain that there's a family history of Celiac but I tested negative, but that gluten makes me horribly ill. End of story. I've run into a couple people who still think it's sketchy, but honestly, the overall reaction has been fine. Truth be told it's basically been a non-issue for me. The biggest thing I've had to worry about is prescriptions, and depending on your insurance, you may be stuck with generics. If that's the case you need to call around and find a pharmacy that has a generic, gluten-free version of what you need. The pharmacists don't need a statement or anything from the doctor saying your medication needs to be gluten-free.

In the beginning it is difficult for many people to tolerate all kinds of different foods, especially when you have such a bad case. Also, even if you don't make mistakes at all, it will take some time to get all the old gluten out of your body, and you may still have symptoms for quite some time. Such is the nature of the beast, unfortunately. It's different for everyone and I would expect with such bad symptoms, it may take you a while to get to a point where some of them stop. With all the intestinal damage done, your body may be having a hard time digesting many common foods, but this may not last. If I were you, for the time being I'd avoid all grains, dairy, and soy. Stick to plain meats, eggs, veggies and fruits for now. Bananas are an excellent source of carbs so if you are having a hard time adjusting, it will help you get some extra non-grain starch. Once you start to feel better, you can slowly reintroduce things like soy or dairy or rice and see if you can handle them.

If you are feeling uncomfortable with seeing a doctor right now, then there really isn't any point. I agree some doctors can really be jerks about this sort of stuff. You know your body best though, so having a mental war with yourself over whether to get a diagnosis so they'll trust your or just not care is probably not worth it. If at some point you DO need to see a doctor about it, there's a doctor section on this site that has suggestions for doctors in different regions.

[caek-is-a-lie]

Wow thanks for all the great suggestions. I feel a lot better now that I've had a couple days to sit and think about it all. I'll probably make an appointment with a specialist...knowing the place I go to, it will probably take awhile to get in which will give me time to round up that copay. lol

I really would rather not go through 3 months of a gluten challenge if I can help it. I think that would land me in the hospital and that's not a pleasant thought. So I'm going to continue eating gluten-free and just try to see a specialist sometime soon. I'd say next month, but that depends on their availability.

I've been super paranoid about crumbs and utensils now that I know the culprit is gluten. I still get nausea, cramping, and my gut has been expelling mucus or something. I lost 5 pounds in 4 days last week, which may or may not be a good thing. I have to avoid milk now too because suddenly that gives me stomach cramps. I know that will probably pass as I heal. I still feel like someone punched me in the gut. My intestines feel all bruised.

(and no bananas for me...those paralyze me instantly...too bad because I love them!) I'm just eating plain meats, veggies, gluten-free condiments & tea, and I'll go search the doctor section tonight for ideas in Portland.

It's just so amazing to me how many people on this forum I can identify with. I feel much more comfortable about everything, although crumbs still make me pretty nervous. I can't get my boyfriend to wipe the counter when he finishes making a sandwich.

Thanks again for your support and ideas!

[sbj]

I lost 5 pounds in 4 days last week, which may or may not be a good thing. I have to avoid milk now too because suddenly that gives me stomach cramps. I know that will probably pass as I heal. I still feel like someone punched me in the gut. My intestines feel all bruised.

Just wanted to chime back in real quick. You are describing symptoms of a lot of abdominal pain. This pain - although it feels like it's in your intestines - might actually be from organs near your intestines. You might have appendicitis or gallstones:

Pain may be felt in the abdomen even though it is arising from organs that are close to, but not within, the abdominal cavity. For example, conditions of the lower lungs, the kidneys, and the uterus or ovaries can cause abdominal pain. ...Abdominal pain is caused by inflammation (for example, appendicitis, diverticulitis, colitis ), by stretching or distention of an organ (for example, obstruction of the intestine, blockage of a bile duct by gallstones, swelling of the liver with hepatitis), or by loss of the supply of blood to an organ (for example, ischemic colitis).

Also, that rate of weight loss is not healthy. Keep a good list of your symptoms to show the doctor.

Best of luck and good health!