bridgeofsighs

I have to say I just went to a new GI this past week and when I told him about this site he pretty much said you can't believe everything you read because everyone seems to blame all of their health problems on Celiac Disease. I think with this site and all of us sharing our stories helps us more than a doctor can. Yes, we still need our GIs for certain things, but all the sharing we do with one another is extremely beneficial and gives us more information than our one GI can.

I totally agree! I love how helpful and kind everyone is around here too. What a great forum!

To me, IMHO a weak positive is a positive. Your GI treating it like it meant nothing and having you stay on the diet until the biopsy to me means he knows very little about celiac as he is basically insuring that you will have a negative result. Both my children and my ex were diagnosed as celiac based on weak positive results and a positive biopsy on one of the kids but the doctor had her stay on gluten until the biopsy was done. All improved on the diet. My blood tests were always negative but they never to my knowledge tested my total IGA and because blood tests were a false negative I didn't have a biopsy until years after diagnosis. My old GI did have one sceduled but he demanded I do a second gluten challenge before it and my reaction was very bad so he canceled it and confirmed my diagnosis based on the reaction (the morning of the biopsy I was laying on the floor bleeding freely from my intestines) and the good results I had on the diet. My new GI did one because he figured he might as well since I was having a lower scope and he wanted to make sure I had totally healed.

Hey Raven, thanks for the quick response.

Seems going to that skeptical GI doc was a mistake. I still have yet to open the bill for that visit, as it sits on my kitchen table staring back at me everyday. I'm just not eager to see how much that useless SOB is gonna shake me for.

I appreciate your insight, as you have set my mind at ease. I guess i just gotta start listening to what my body is telling me from now on. Right now, my mind is telling me that i have to be more diligent in watching what i eat, because its taken me faaar too long to type this reponse. I often feel like i should qualify for being handicapped. Mentally. Can i get a parking sticker for that?

Thanks one more time!

I had a strong mental addiction to alcohol (beer) for a few years. I believe it had a lot to do with Celiac disease because my thirst for alcohol has diminished greatly upon going gluten-free. I currently only drink distilled clear liquor, gluten-free beer, and wine in moderation, with no desire to binge anymore.(however, i do still enjoy drinking on occasion)

I'm not saying that alcoholism and Celiac always go hand in hand, but in my case, i know they did. It makes me wonder, how many other alcoholics could overcome their addiction with a gluten-free diet?

Hello everybody, i think i have finally mustered up enough brainpower to make another appearance. Thank you all so much for taking the time to read and give advice, it has been very much appreciated!

Your IGG was positive. Did your doctor do a total IGA? Some of us are IGA deficient and that will give a false negative on the IGA related tests.

If you feel better on the diet then stay on the diet consisitently for a while.

Glad to hear you were there when the toaster bit the dust.

Hello Ravenwoodglass. Unfortunately, the results that i posted on here are all that i got. I remember the nurses questioning each other as to why i was only getting 3 panels of the complete 4 panel blood tests. They drew my blood into 3 vials, and the above results were all i got in return. Borderline results at that. Good grief. I'm curious, what would having a weak positive blood test result mean to you? Why did this GI doc treat it like it means absolutely nothing? Then go about ordering me a biopsy surgery for a month down the road, and instructing me stay on a gluten free diet up until that point?

I can't address the testing, but I can add to the popping cracking joints.

All my life my knees crack when I bend them. Using my hands, my knuckles crack from the slightest pressure. My spine would often hurt until I twisted a certain way and it cracked.

Later I developed achy joints and hips. The hips cracked too.

4 months gluten free and nothing is cracking or achy.

Very strange.

I'm sorry your Dr. didn't believe you. I have had the same experience 26 times.

The GP's don't think they can handle my symptoms and refer me to a specialist.

The Rheumatologists and Dermatologists think I'm a hypochondriac and before I get 10 symptoms listed, they give the smile and knowing glance to the nurse, and ask if I have had any testing by my my current GP. I say no...they referred me to you for that. Specialist says, I didn't think they would test you. Here is an anti-anxiety that should help you. Come back in a month if anything bothers you.

Course I don't go back.

It is infuriating. I'm glad you yelled. I just slinked out and went to lay on the couch for another month until I could get the energy and courage to go to another Dr.

I'd say just trust yourself and the reading you are doing here. I'd be thrilled if I got that close to a diagnosis. But if you wanna know what is going on inside you, it might be valuable to get the biopsy. Hope they schedule you quick though.

Hey there, thanks for the response. If by chance you read this, how are you doing these days? Sounds like you had it rough for a long time, but are you doing better now?

Just as a check here, how 'borderline' were your results?

Can you post your results for us with the ranges the lab uses?

A word of warning - if you have been off gluten for some time (I know you were gluten free at the time of testing - for how long?) it could affect the results of your biopsy as well as your blood tests. Some doctors, even the "know everything about celiac" experts don't seem to know this

Hello there, i would love it if you or someone else could help explain my test results to me. None of it makes any sense to me yet, and at the risk of sounding like a complete idiot, i'll even go as far as saying that i'm not even sure which numbers are my results, and which ones are the ranges. EEP!

Prior to having my blood drawn for these tests, i was on a gluten heavy diet for two weeks as instructed by my primary care physician. I think he pulled the two week thing out of thin air to be honest, because he mentioned nothing of the importance of continuing to consume gluten up until the tests for a more accurate result. I actually had to mention it, and as a result, he expressed a slight look of befuddlement. He then proceeded to pull out a large book in which he stuck his nose in for a minute or two, and came out agreeing, instructing me to consume a gluten heavy diet for two weeks. Now before all of that, i had experimented sporadically with a gluten-free diet within about a months time span... A few days on the diet, a few days off the diet, a few days on the diet, etc... just to see if i noticed a change in my behavior and how i felt. During those few short stints of being gluten free, i noticed drastic improvements in my energy levels, depression, brainfog, my ability to focus, and moods. Looking back, i approached those mini dieting stints with an 'all or nothing' type of mindset. The days i went gluten-free, i ate nothing but whole foods, nothing processed. The days that i went back on a normal diet, all i ate was unhealthy processed garbage. Gosh, i think i'm just now starting to realize how unhealthy my diet has been for the past few years. No wonder it feels as if i'm falling apart.

At this present day and time, i've been on a gluten-free diet for almost 3 weeks after getting the phone call from the doctor's office saying that my blood tests revealed i have Celiac disease. My symptoms aren't really improving this time, but maybe i'm reacting to trace amounts of gluten through cross-contamination? I won't write off that possibility, even though its still hard for me to fathom that i might be getting sick from a trace of a breadcrumb in my toaster, especially with my diagnosis being "borderline", and then strongly suspecting an intolerance of some sort to sugars. With all of the sensitivities you people mention yourselves having, i start to wonder if i have the same problems, then everything kinda mushes together into one big confusing ball of sickness. And yes, up until a few days ago i was still using my old toaster to toast my Udi's, despite how much you guys emphasize the importance of getting a new one. Check this out though, it actually started shooting sparks and smoke the other day, so i had no choice but to throw it out. Could it have been a sign?

Hello all, just thought i'd take the time to share with you the details of my first visit to the GI doctor.

Let me start by saying that my primary care physician had diagnosed me with Celiac disease through blood testing two weeks prior to this visit. Well, after showing the tests results to the GI doctor, he says in a grumpy voice, "It's borderline!". Apparently he was not convinced that i have Celiac disease and now he wants me to get an intestinal biopsy surgery. I, personally, was relieved to get a diagnosis from the blood tests because i thought i had avoided the need for this expensive biopsy procedure. Let me also say that i came well prepared for this visit to the GI doctor. I had all sorts of questions about my newly diagnosed disease, but with each question i asked, and with each comment i made about my symptoms, i felt like i was getting the cold shoulder, because in his eyes, he just wasn't convinced i had Celiac disease. Another huffy response i got was, "In all my 44 years of dealing with Celiac disease, i have never heard of those symptoms being associated with Celiac!". I got huffy right back with him and shouted, "What? Do you think i'm making this up?!" lol. He made that comment after i told him of my symptoms of popping and cracking in my joints, that i can feel, and even often hear when i move. In some joints it feels like muscles or ligaments grinding against bone, like an inflammation, but without the pain.

So, i was wondering, does anyone else experience similar symptoms with Celiac? Or possibly from an intolerance to certain types of sugars? I'm starting to suspect that sugar is the next culprit in trying to solve the mystery of what ails me, lol.

Thanks for reading, and my apologies if it doesn't make sense or just seems like a bunch of rambling... i've been a little out of sorts lately trying to figure all of this out.

Since being diagnosed, i too have been wondering about how airborne wheat particles from crop harvesting would affect someone with Celiac disease. What a shame it is to be diagnosed with this disease only three years after buying my first home... a home that is completely surrounded by farm fields. I've lived in the rural countryside my whole life and the thought of selling my home and moving to the city makes me feel a little uneasy. This kinda sucks.

Hi everyone! I'm a 26 year old male from the Columbus, Ohio area.

I've been lurking around on this forum for a few months now, but never felt like i should get too involved with posting until i was certain that i had a problem with gluten. I knew that when i stumbled on this website and started reading about Celiac's disease, that i had a good lead on possible answers to why i was suffering from a slew of psychosomatic symptoms (depression, anxiety, ADHD, excessive mood changes, brain fog, fatigue/lack of energy, mild to severe abdominal discomfort and irregular bowel movements) that were negatively affecting my quality of life. Upon learning of Celiac and/or gluten intolerance, i decided it couldn't hurt to cut it out of my diet (along with dairy) for a few days just to see what the result would be. Well, to my surprise, after just a couple of days, i started to notice a drastic improvement. After a week or two, i got a taste of what it felt like to feel normal again. Amazing! From that point i was pretty certain that i had a problem with gluten, but needed to know for sure if it was Celiac or just a gluten intolerance. So i set up an appointment with my doctor in hopes to get tested for Celiac disease. He ordered me up some blood tests, virtually no questions asked. Anyways, to cut to the chase after all that rambling, the blood test results came back positive for Celiac Disease. Not exactly a comforting thing to hear, but at least i have the answer and hopefully now i can get on the right track to a healthier and happier tomorrow.

I look forward to becoming a regular participant of this forum and continuing to learn all i can about this disease.

All the best,

Derek

Hey GFBeer,

Thanks for the advice. I was a fan of microbrews, myself. Darker, hoppier, type beers (Ales, IPA's) Does anything tasty exist in the gluten free beer world? I'm open to any and all recommendations you can give! Many thanks!

Your problem may have been gluten in the beer. Gluten for some of us is addictive and when you combine it with alcohol it can be a double whammy. I would wait until you have been gluten free for a bit longer before you try the gluten-free alcoholic beverages. Give yourself time to heal and get through any withdrawl you may experience off of the gluten. When you decide to try a gluten-free drink do try with something like gluten-free beer, wine, clear rum with no flavorings, tequila or another non gluten grain derived alcohol. Not all of us react to distilled gluten but there are a few so best to avoid it at first.

I used to get hangovers from alcohol free beer and wondered why. After I was diagnosed I realized it was the gluten in the beer that was giving me what I thought was a hangover not the tiny bit of alcohol in it. That could be what is happening with you.

Thanks for the reply, raven. I was truly starting to believe i was going insane and that there was no hope for me. I thought i would continue on this downward spiral until the day i died. Now i shed tears of joy on a daily basis, as it seems i have found the solution. If i end up having to quit drinking for good, so be it, i just want to feel normal again.

Okay, so i just started a new topic and hit the 'post new topic' button a few minutes ago, but it never showed up. It's a darn shame too, as it took me over an hour just to put my thoughts into words for you all to read! If this shows up, i'm gonna be upset! Sorry for the clutter!

Hello everyone, first time poster here. I'm a 26 year old male who at one time loved to drink alcohol. Beer, more specifically. Let me bring you guys back to before any gluten intolerance suspicions came into the scenario...

Gradually drinking had become less and less enjoyable for me. It seemed even the consumption of one or two beers would put me into a bout of deep depression with brain fog that seemed to linger for days, not to mention just feeling physically drained. Over time i started to accept that i was an alcoholic and that i would never be able to drink again without these issues affecting my quality of life. I loved beer, but i never felt i had to drink just to function. I never drank alone. I never woke up in the morning and had a breakfast beer. Hell, i was lucky if i had a six pack a week on average. I just started to accept that i was an alcoholic that would never be able to drink again without issue, even though i never displayed those tell-tale signs of a true alcoholic. So i decided to quit drinking. Failed attempt after failed attempt, i finally made it to a month without drinking alcohol. Hardest thing i had ever done. The emotional rollercoaster ride, the mood swings, the irritability, the depression, the hopelessness... it was all there in full swing. Yep, okay, check, i definitely have an addiction to alcohol. But the depression never really seemed to clear up after that months time being free of alcohol. The brain fog was still as thick as ever.

That's when i started to become suspicious and suspect there might be a deeper underlying source. Eventually, by means of the interwebz, i stumbled upon information about gluten intolerance and how gluten can be the cause of certain neurological issues. I took that information and ran with it. So i changed my diet and almost immediately i started to feel better and have more energy just from eating whole foods, and cutting out all of that processed garbage. After a little over a month sober, and a week on my new gluten (and dairy) free diet, i felt like i was at the top of my game! I felt normal again, something which i felt like i hadn't known for years! What a revelation!

Now i'm starting to question, "Hmmm, can i possibly drink again without issues?", "I may be an alcoholic, but am i really that bad?" and "If i switch to gluten free beer or liquor, will i be okay?" These are the thoughts the are currently running through my mind. I know alcohol is a depressant, so i expect some minor negative side effects, but jeez, if i could handle a gluten free beer or two, and be able to drink socially again, that would be fantastic!

Has anyone ever experienced something remotely similar? Any thoughts? Does my scenario sound like something that could logically happen or am i just a crazy alcoholic looking for any excuse to drink again?

Thanks for taking the time to read my post! I'm looking forward to continuing a gluten-free lifestyle and being enlightened on celiac disease and gluten intolerance, even if i'm not suffering from it. Bye for now!