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[Denise121]

Hello, everyone. I have been having celiac type symptoms for several years now, most notably severe GERD. I've had reflux issues all my life, so bad that I was failure to thrive as an infant. I got better as I got older, but when I became pregnant with my first child, it got so severe I'd vomit. I've been on PPIs since he was born (9 years)and nothing seems to help for long. I had problems with my gallbladder and then had to have it removed. A few years later, I developed IBS with horrible cramping and bloating after eating.

I went in last month for another endoscopy and my GI found gastritis (every test seems to find gastritis) and atrophy in the duodenum. I also have unexplained malabsorption. She did biopsies for Celiac but they came out negative. She ordered a colonoscopy, but that didn't turn up anything either. I admit I have lost faith in this doctor because during my colonoscopy, she wrote that I have an inverted appendix in my report. I had my appendix out when i was 13 and I told her that. Anyway, she chalked everything up to GERD and IBS. She wouldn't do further testing so I ordered the IgA test from Enterolab. I understand the controversy around this test, but I'm running out of options. My results came back at 21. I decided to give gluten-free a try two days ago. I no longer feel bloated or have cramps after eating, and while I'm still on prevacid, I haven't had any of the breakthrough heartburn I normally get. I suppose this could all be placebo, but I am noticing some improvement.

How long is a fair trial of a GFD? I don't really know where to go from here without having a doctor's advice. I really hesitated joining a forum for a disease I don't technically have, but at this point, I'll try anything. I'm tired of doctors acting like I'm nothing but a hypochondriac when something is obviously wrong. Aside from asthma, the only major health problems I have are all digestive. That has to mean something.

I want to see what, if any, problems going gluten free resolves. I'm sorry for rambling on like this, I just don't know where else to turn.

Denise

[mushroom]

Hello, Denise, and welcome.

Relax, you are among friends here. You will find many 'hypochondriacal' non-diagnosed gluten intolerants here -- in fact you are reading one whose PCP kept wanting to send her to a psychiatrist, not because of depession (although I should have been depressed by her ) or any other psychiatric symptoms other than my imaginary GI disorder, which she would grudgingly sometimes label IBS. She would never even test me for anything so I even gave up talking to doctors about it because I was tired of the 'head case' label In the end, I figured it out myself, came here, and have never left.

It is really positive that you have already noticed improvement in your symptoms. For most of us it takes a bit longer. They generally recommend three months to be a good gluten-free trial before you make up your mind. This is probably because sometimes both forms of testing can be false negatives (approx. 20% error rate) and if you are in fact celiac your GI system has some healing to do before you start to feel better. You may be interested to learn that there is a connection between asthma and celiac also -- who knows if this might not show improvement too.

You don't need a doctor's permission to eat gluten free, fortunately, since it is a prescription you can write for yourself. Youhave made every attempt to get a diagnosis, so now you have made the logical choice of trying the cure to see if it works. So make yourself at home and feel free to ask any questions that pop up.

[AVR1962]

Denise, so many here have had to do just like you, myself included. I also knew something was wrong. I was having vision issues and increasingly tired, docs blew me off. Feb, after a liver cleanse, I was in ER. My medical issues finally came to life after the cleanse and I was miserable. Even in ER with my heart going nuts they had no clue. I had a list of symptoms as long as my arm, was being sent to one specialist after the next and had so many viles of blood drawn, and yet nothing

Food allergies run in my family. I have been thinking for years that I was one of the lucky ones and had prided myself in my cast iron stomach. One of my family members suggested to me that I go off gluten. My thoughts were that I had nothing to lose at this point, I was quite sick. I was off 3 weeks and I knew.

In the process of all the testing done docs found that I had bone loss, I had malabsortion which inturn caused the nerve damage that I am still dealing with (vits have helped traumendously). I too had the terrible GERD issues and was on Nexium and a low acid diet to heal all that. Finally thru my symptoms, the rpogress I made with a gluten-free diet, and results of all my other tests docs were able to diagnose me with Celiac. So don't give up hope and realize that you ahve to do what is best for you to feel better.

The people here have been a huge support for me and I have learned a great deal thru this forum and the site.

[Jen Z]

Interesting that you mentioned vision issues, AVR1963- could you elaborate on that? I too have had what I call 'jumpy vision' for a while. Images seem to move around for me at times- often related to feeling tired or having a puffy face.

[AVR1962]

Interesting that you mentioned vision issues, AVR1963- could you elaborate on that? I too have had what I call 'jumpy vision' for a while. Images seem to move around for me at times- often related to feeling tired or having a puffy face.

What started out as blurred vision went to double vision. Then I was having trouble with depth perception and felt like the lane I was driving in was too tiny. Ended up driving to close to a median, hit it just right and ended up with a flat at a fairly good rate of speed. Then I started having vertigo issues.....blinds on the windows were "blinding" to look at, sun hitting an escalator would make the lines in the steps pop out and was blinding, lines in brick patterns on the ground seem to jump out at me. After that then my eyes started jumping. I will read and miss one word or my eyes will go to the next sentence. Sometimes I have to read and reread things several times. I teach piano and have made so many mistakes in read the lines.....I'll think the kids made a mistake with their notes when they haven't.

The blurred and double vision have passed and my depth perception is good now and I no longer feel like my driving lane is too small. I do still have vertigo issues and my eyes have continued to jump but I am reading the music much better.

I too had some swelling in my face and my skin was red, that is gone. I thought I was the only one that noticed but a friend mentioned to me just a couple days ago that my skin was sure looking good. I think the gluten-free diet and my Bcomplex had a,lot to do with that.

[Denise121]

Thank you guys so much for the kind responses!! I was so nervous about posting here without an official diagnosis. I truly don't understand what the atrophy could be from, but my GI assured me I don't have celiac and seems unconcerned about the other issues. I think one of the reasons she is convinced it can't be celiac is because I'm overweight. I have had a normal weight all my life, but when all the other problems started, I just started gaining weight, and try as I might, I can't seem to lose any of it. I always feel like I am starving, but I force myself not to eat as often as I feel I need to because I am afraid of gaining more weight. I'm not inactive either. I have four boys, two of which are 11 month old twins, so I stay pretty busy!

Thank you all so much. It sounds silly, but I'm so relieved that maybe I might not be alone with this like I thought. My husband and family are great, but I'm a bit worried they might get impatient without a diagnosis to back me.

That is so bizarre about the vision thing. I too have a problem with mixing words from different lines while reading. And I am constantly tired. I have tried getting help for that for years but after blood work came back okay, my doctor said she "strongly advised" me to begin an antidepressant. I refused and she told me to think about it. I found another doctor, but I think things are heading in the same direction. I really hope gluten-free works. For some reason I feel worse today than before I even went gluten-free. Just cranky and drained. I wonder if there can be some kind of gluten withdrawal process? I only ask because I quit smoking a few years back and this feels similar.

[jswog]

I wonder if there can be some kind of gluten withdrawal process? I only ask because I quit smoking a few years back and this feels similar.

There is ABSOLUTELY gluten withdrawl! Gluten can have a similar effect on the brain as some street drugs (heroin) and can have similar withdrawl. I was completely MISERABLE for the first two weeks I was gluten free. I'm about 5 1/2 weeks now and feeling great!

[Bubba's Mom]

I'm sure as you read the posts here you find that most of us have had issues for years. We have been given some tests..but not the important one..the test for Celiac. OR some people test negative on the blood tests and aren't given the endoscope (the gold standard for DX).

In my case..my blood work came back negative. The endoscope showed villous flattening which my Dr. said was Celiac disease.

SO many Dr.s seem to think that the patient should have D, weight loss, etc. and don't think of the MANY other symptoms of Celiac. You can be overweight and have Celiac. The body thinks it's starving due to malabsoption and stores everything as fat. This happened to me for quite a while and was confusing because I didn't eat much..at least not as much as my weight would indicate. Eventually I did start to have pounds drop as I got worse though.

Give gluten-free a strict try. It's surprising how many things have it so read labels!

If you feel better gluten-free and test it by eating some after giving the diet a good try (3months) and get a bad reaction..you will have your answer.

I know without an official DX it's hard to get your family and spouse to take it seriously. Be your own advocate..and tell them you are giving the gluten-free diet a test. It doesn't matter if anyone else agrees with it or not. It's your life and your health.

I'm curious if you were given the genetic marker blood test? A positive genetic marker test, villous atrophy, and relief of symptoms on a gluten-free diet would be a DX for Celiac.

[Denise121]

It's good to know about the withdrawal because I was seriously starting to think maybe I was imagining all this. This is only my third day and it seems like its just gotten progressively worse. I keep getting this spacey feeling and can't concentrate. I either want to snap at someone or cry. We went to a pizza place today that is known for gluten-free crust. (they put bright green stickers on all the orders and the crust is made in a separate dedicated facility and stored in separate freezers to avoid cc)I wanted pizza so badly and then I got it and started crying there in the restaurant! It wasn't bad, not really. I could definitely get used to eating it, I think, but I was so disappointed that it didn't taste like pizza. I was so embarrassed but couldn't help it. My favorite food group is essentially off limits now and it just hit me that this is probably how it will be from now on.

Bubba's Mom, I did have an endoscope with biopsy. I have patchy areas of atrophy in the duodenum, but the pathologist said the villi were fine. I had no other testing done, including genetic because my GI said it couldn't be celiac. She never explained the atrophy and isn't even concerned about that or the malabsorption. She just said IBS and wrote me a prescription I never filled. This is also the same woman who thinks I have an appendix after I have told her mine was removed.

[notme]

i think your dr is not educated, and be aware: the health care industry isn't as hip to celiac as they should be. no drug companies involved = no information jammed down everybody's throat. if you have atrophy, that is a pretty sure sign. alot of us have lived similar stories as yours. i was diagnosed as everything (IBS, colitis, blah, blah, blah, write me another prescription i will never fill. research this celiac thing - it affects your body systemically. i have healed in the past year so much that i feel like i am 10 years younger. also had the vertigo and driving issues - happy to report i drove 750 miles on vacation this past summer, so take heart! i would never have believed gluten messed me up so badly and so entirely.

withdrawal is real, so be aware of it so that you don't kill your loved ones rest, alot and give yourself permission to rest! it is also normal to grieve (i know, it is a Big Deal to adjust your whole eating routine. but it can be done a little at a time.) also, i would advise you to eat simply at first and also skip dairy for awhile. that will speed up healing. you will get better at feeding yourself - it is a learning process. we all had that "OMGOSH i am NEVER going to be able to eat this EVER AGAIN!" but it gets easier to deal with. good luck and you are in the right place to cope with this. the people on this forum have saved my sanity more than once

[jswog]

withdrawal is real, so be aware of it so that you don't kill your loved ones rest, alot and give yourself permission to rest!

Another thing that helped me out GREATLY in getting over the withdrawl was to drink LOTS, and I mean LOTS, of water, about twice the 'normal' recommended level. I think it just helps to flush/detox all of the crap your body needs to get rid of!

[mushroom]

Yes, the physical withdrawal is very real, and so too is the emotional grieving of the loss of things we love. It is usually best to wait a while until your tastebuds have forgotten how some of those gluteny things used to taste before you try too much subbing of gluten free things. You will be eating lots of new and different foods too, and those tastes require an adjustment because they will be unfamiliar to you. But do not despair - there is really yummy food out there and it won't be long before you are churning it out right and left (of course with the naturally gluten free things you can do that already!).

When you get adventurous and there is something you really, really want to make, just google whatever it is and add gluten free. Good old google will take you to all the gluten free bloggers and offer you thousands of choices, and there are further thousands on our recipe thread.

[AVR1962]

Thank you guys so much for the kind responses!! I was so nervous about posting here without an official diagnosis. I truly don't understand what the atrophy could be from, but my GI assured me I don't have celiac and seems unconcerned about the other issues. I think one of the reasons she is convinced it can't be celiac is because I'm overweight. I have had a normal weight all my life, but when all the other problems started, I just started gaining weight, and try as I might, I can't seem to lose any of it. I always feel like I am starving, but I force myself not to eat as often as I feel I need to because I am afraid of gaining more weight. I'm not inactive either. I have four boys, two of which are 11 month old twins, so I stay pretty busy!

Thank you all so much. It sounds silly, but I'm so relieved that maybe I might not be alone with this like I thought. My husband and family are great, but I'm a bit worried they might get impatient without a diagnosis to back me.

That is so bizarre about the vision thing. I too have a problem with mixing words from different lines while reading. And I am constantly tired. I have tried getting help for that for years but after blood work came back okay, my doctor said she "strongly advised" me to begin an antidepressant. I refused and she told me to think about it. I found another doctor, but I think things are heading in the same direction. I really hope gluten-free works. For some reason I feel worse today than before I even went gluten-free. Just cranky and drained. I wonder if there can be some kind of gluten withdrawal process? I only ask because I quit smoking a few years back and this feels similar.

Sometimes I really wonder about docs!!! :-) yes, you can be overweight and have celiac. It's the body's reaction to trying to survive because you are not getting enough nutrients. This runs in my side of the family. When you then go on gluten-free diet and the body starts healing and absorbing nutients you may find that you will start losing weight. Not everyone is the same. I would be concerned for what your body is absorbing at this point.

Unfortunately there is a withdrawl time, and again I think it is different to some extent for everyone. I did things slightly backwards. I did a liver cleanse that revealed my health issues and I went thru quite a detox time but then when I started on the gluten-free diet I did not go thru the withdrawls, I just started getting better.

[AVR1962]

One more thing I did want to add. Think twice about the antidepressants. Reason being is they have an nerve deadening agent in them. Some docs treat people with nuero issues with antidepressants for this reason however, that does nothing to resolve any nuero issues. Nuero issues need proper nutrition, vitamins and mineral. Thought I would throw that in incase you were considering them.

[Di2011]

I am "undiagnosed" but can't get tested due to $; 38 y/o.

I have always avoided or 'don't like' gluten heavy products. I hid under beds at boarding school to avoid getting caught skipping breakfast, 'don't like pasta', avoided breakfast all my living memory, etc etc and ended up taking up a bakery sales job at 36y/o. I ate lots more bread and was surrounded with "floating flour" for 30 hours a week. I got sicker and sicker and thought the breaking of the Australian drought in the past 12 months was just playing havoc on my "hay fever" symptoms. I spent 3 days in bed with infection (etc), went back to work for a 6 hour shift and came away from that with a head to toe itch ("Mosquito bites" I thought - but in the middle of a very cold winter I should have known better). I never went back to work in the bakery and four months later... I've had so many 'accidental glutening' and 'just a bit will be okay' and 'it can't be as serious as coeliacs' problems that the past four weeks of being ""really serious"" gluten free and limiting processed foods (try one gluten-free cereal box three times without introducing another processed food) that I know now what (specific products) cause me problems.

2 weeks ago I had my first weekend away (Sydney, Australia) from home food and I spent 2 weeks itching and dealing with the consequences of a little bit ((I had checked with chef and was assured the "corn flour" on the squid would be okay)) Two weeks later I have just returned from another trip to Brisbane and I feel good. Limited itching ((I think due to Iodine which is required to flare up the Dermatitis Herpetiformis -DH-)) and I ate well. Lots of rice/corn thins, tomato, avocado and thanks to Brisbane chefs for a great gluten-free awareness. After the past few months I was astounded that I got through four days without an outbreak

I coughed and did a bit of scratching this afternoon and I can absolutely and only isolate this to the sharing of a water bottle with my 9 y/o son today.... Only today do I truly think that I can take me and it (whether it be celiac / gluten allergy) as a way of life. Takes some thought, consideration ((for me it took getting off gluten and clearing my head to be able to even do this))

NO sharing cutlery, no gravy or soy sauce ('it is only a "bit"), no "it should be okay/i 'think' it is gluten free" etc etc

You can do it.

Try and do it quicker than it took me and others. You could feel as good, well, energetic and positive as I do today.

[Bubba's Mom]

Bubba's Mom, I did have an endoscope with biopsy. I have patchy areas of atrophy in the duodenum, but the pathologist said the villi were fine. I had no other testing done, including genetic because my GI said it couldn't be celiac. She never explained the atrophy and isn't even concerned about that or the malabsorption. She just said IBS and wrote me a prescription I never filled. This is also the same woman who thinks I have an appendix after I have told her mine was removed.

[Denise121]

Thank you for all for the advice and understanding!

I know the gluten-free foods in general aren't that great for you, so I've been trying to avoid them. I just wanted pizza so bad I caved yesterday. I've mostly been eating veggies, fish, rice and fruit since going gluten-free. I've had some potatoes here and there, and some rice cereal with fruit for breakfast. I've been doing my best to read all the ingredients. One thing about Natural flavoring/natural flavors?

Sometimes it lists additional ingredients following in parentheses, sometimes it doesn't go into any further detail. I've seen this on canned fruit before. Is it possible for this to contain gluten? What about when it says "spices"? Should I worry about gluten here?