Celiac Disease Suspected - I Hope So

[Lakme]

So, my long journey has brought me here, from several health anxiety and autoimmune forums I've finally arrived at something I hope is the cause of my problems.

My more debilitating symptoms started about a year ago, when I got food poisoning, although it may have been even before that. Looking back into my childhood, I had anxiety and a lot of the behavioral symptoms of a celiac. The only thing I'm not quite sure of is that, standing at 5'11, I'm not sure if I could be so tall, or perhaps I would be even taller.

When I was a kid, I threw a hissy fit whenever my grandmother tried to drag me to the doctor. I kicked and screamed when she tried to take me to get a blood test. I hated anything invasive. The standard cognitive tests and dentist visits were fine, but I absolutely refused to have my blood drawn, except with the prick of my finger, which still bugged the hell out of me, and I teared up when that thing scraped me. I probably would have been diagnosed with celiac a long time ago, if I had it.

 

I've been depressed for most of my life with a touch of anxiety. I did terrible in school because I didn't feel like doing the work. I had great test scores. At the end of the year, whenever we would have those tests I would pass with high scores even though I did poorly in about half of my classes. My work ethic paled in comparison to my intellect. 

 

I ended up getting kicked out of school because of an incident I became involved in my junior year. I had finally made friends I struggled so long to get, and in the blink of an eye they were all gone. I held firmly the belief that those I had gotten into trouble with would come after me for revenge because they were part of a bad crowd. I was forced to keep going to school because I was still underaged, but tried as hard as I could to stay inside and away from people. I had to go to counseling because I told the police I had anger issues and that was why I snapped in that situation.  I became reclusive, and only stayed in contact with my closest friends. I honestly wanted them to think that I was dead.

I ended up going through 2 rough situations, one where my grandmother's husband died of colon cancer, and one where my uncle died of liver/kidney failure - both related to heavy drinking and drug use. My anxiety spiked. I heard the death rattle for the first time in my life. I was convinced that my family didn't do enough to help my uncle, but in fact it was him that had been doing it to himself. He passed away the night I learned that he "had 2 weeks left". He wasn't even on any painkillers. I started to develop strange thoughts where I was convinced that I would be the next to die.

These instances were just the beginning of my emotional problems. It took a very long time for my symptoms to fester.

In the November 2015, I started working my first job. Manual labor at that. I was helping my boss install air conditioners and heaters in pristine houses in different parts of LA that cost up to 5 million. My boss started to talk about having me work there more and as someone who had plans that involved going to college you can probably imagine the discomfort I felt at the idea of working on air conditioners for the rest of my life, even if the money would be good. This was when the anxiety attacks began. Although there weren't any physical symptoms then, I started to feel my depression and anxiety weighing down on me.

On Christmas 2015 I had an anxiety attack that presented with pain behind my right eye, something that sent shivers down my spine. I eventually got laid off by my boss in January and went back to lounging around my house for another month. I didn't really notice much wrong then, I was convinced that I might have to start taking antidepressants for my anxiety attacks pretty soon, as they would bother me a lot.

One night, I got hungry. It was 9pm and my grandmother wasn't home yet to make dinner, so I asked my Grandfather to take me to Panda Express, one of my favorite places to eat. 

I brought the food home and one of the first things I noticed was that it tasted vile. There was something off about the rice. I couldn't quite put my finger on it. It was my favorite food, so naturally, I ate the rest anyway without a second thought. 

A couple hours later I had a nauseous feeling in my stomach. I knew I had gotten food poisoning. I spent the next 24 hours vomiting and squirming around on the floor until my symptoms went away.

 

But this wasn't like other times I had gotten sick. This time was different. When I woke up that morning, there was something wrong with me. Not with my stomach, but with my vision and my eyes. No, my vision wasn't blurry, but there was something else incredibly wrong with me. I take pride in reading and enjoying my foreign programs in which I have to read subtitles, but for some reason, I just couldn't focus. I couldn't read. I couldn't watch TV. I couldn't do anything that required a decent level of mental acuity. I brushed it off and figured it would probably go away in a couple of days. When I walked to the liquor store the next night, I noticed something strange. The halos around the street lights seemed larger and more pronounced. Although I'm not sure what it was, if that was even the problem in the first place, I knew something was wrong. My anxiety was the worst it had ever been. I hadn't been to a doctor in years, let alone care about my health. Most of my anxiety had to do with my surroundings, but suddenly I was compelled to google my symptoms. I had a strange feeling behind my eye and I started to see rings around lights. I thought I had glaucoma. The visual symptoms became worse. I started to see visual migranes, hard to explain, but they're like patches in my vision, kind of like visual fog but larger and more pronounced, and with afterimages whenever I see lights. It's aggravating to say the least.

Anyways, I had about a week of these symptoms before I dragged myself to the eye doctor and told her I was convinced I had glaucoma. She looked at my eyes and said they were perfectly fine. I was a tiny bit nearsighted, but I had enough visual prowess to drive or doing anything else without having problems. This came as a surprise to me,  I couldn't even read or watch my favorite movies!

I was convinced that all of this was just anxiety at that point. Loss of concentration didn't seem that bad. I was just glad I wasn't going blind. Then I REALLY wouldn't be able to watch TV.

 

A week passes by before I develop another debilitating symptom. Severe neck pain. I woke up one morning and it was agonizing. I'm not sure when I noticed I had tinnitus, but this was aggravated to say the least. The migranes and anxiety reached their peak. At that point I was convinced I had developed some form of meningitis. Falling asleep at night was like passing out after a long day of not being able to do anything. I was having panic attack after panic attack. I thought that it might be a tumor instead and I was convinced that I wouldn't even be alive for 20th birthday. There was a weakness that radiated down my left arm and leg. At this point, I was desperate to get even a month left to live. I was constantly pleading to a god I stopped believing in a long time ago for more time. I went to the doctor for the first time in years, convinced that I had meningitis. Both my grandmother and my GP laughed at the notion. The GP diagnosed it as nerve pain, gave me antibiotics for my constipation, antidiarrheal medicine, and an antianxiety and sent me on my way for a couple weeks. I took the antibiotics for a bit but ended up spilling them into the sink at which point I figured I probably couldn't use them anymore

I don't remember any of my gastro symptoms then as i didn't think anything of them. All I can remember is being constipated for days on end, which wasn't very fun either. Eventually, I went back to the GP and she prescribed me elavil for my tinnitus and my nerve pain, which made just about everything that bothered me wither away at that point. The strangest thing, actually, was that my symptoms went away BEFORE I started taking the pills. Of course, I didn't know what happened, but I had a day when my symptoms went away before coming back again and I didn't want to take a chance, so I started the medication right away, and they never did come back. Swell right? WRONG.

 

I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay.

It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh!

I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah....

Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer.

I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point.

WBC 8.7 (normal)

RBC 4.94 (normal)

I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering.

I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great!

But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils.

This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)

 

Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee!

-Lost 6 more pounds between that point and about a month ago.

-Kept taking paxil and had several more reactions similar to the one that put me in the ER.

-Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating.

-Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned

-Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely

-Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.)

-Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful. 

-Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat.

-My hands and feet felt like blocks of ice, and my feet burned when I got in the shower.

-Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it

-Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell.

-Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.

 

I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear.

"We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines.

I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause.

Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms)

I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was.

I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back.

Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains.

I hope I can eventually get diagnosed and get used to this place.

 

 

 

 

[Ennis-TX]

Sounds like my hell years ago in a way, heavy anxiety, thought I was dying, I was running a bucket list, random bouts of anger and frustration at why my hands, feet would not do what I wanted, and my brain would not process things right, thoughts just seemed to loop, I was constipated for 4-10 days at a time. Layed out in bed someday. Had a few occasions where my body would just go out on me, like collapse to the floor once with only one arm responding.

Eventually found out it was celiac, had to get my own place trash everything and start my life over from scratch in a gluten-free dedicated environment, soaps, foods, dishes everything gluten-free. Been slowing healing over the years and gotten much better.  Had some other complication develop from the disease but at least I am not dead.

I might suggest getting tested, eat gluten in small amounts for the test like a cracker or half a slice of bread a day, need to be eating it for 12 weeks for the blood test and 2 weeks for the endoscope. Ask you doctor for a FULL Celiac panel blood test, also see about getting that endoscope with several biopsies.

Welcome to the forums. this place is great for support and you will find many of us have had similar issues. Thank god I never had the eye issues not being able to watch anime would have killed me -__- Still to this day wish I had the immortal body of Alucard. Anyway few links to help you out and give you some ideas, and make life easier.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

 

 

 

[Jmg]

8 hours ago, Lakme said:

Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains

Yes I made it  Welcome Lakme, you've found a great community and resource and I'm sure myself and Ennis won't be the only ones that recognise elements of our own experiences in your account. 

In addition to the links Ennis sent you above and the stickied forum faq, I tried putting down some info that may be useful to people just realising they may have an issue with gluten, you can find it in this thread: 

 

Reading your account you do tick a lot of the boxes and perhaps you have found the underlying cause. As that thread explains however, we can't diagnose you, if you want answers you'll need to be eating gluten in order for the tests to work. I know this is probably the last thing you want at the moment, but do read the thread and think about it. You're young and that diagnosis could prove useful for a number of reasons in the years ahead. The longer you leave it, the more of a challenge the gluten challenge may prove. 

Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too.

8 hours ago, Lakme said:

I started to see visual migranes, hard to explain, but they're like patches in my vision, kind of like visual fog but larger and more pronounced, and with afterimages whenever I see lights.

I get these too. It's not formally diagnosed, like you I had a physical exam of the eye which failed to show anything, but I believe it to be optic neuritis. It's vastly improved since my diet change, as has an awful lot of other stuff.  So if you're celiac or non celiac gluten sensitive you will hopefully see similar improvements in the weeks, months and even years ahead. 

I wish you the best of luck. 

Matt

[Lakme]

2 hours ago, Jmg said:

Out of interest how long since you started on the diet and have you noticed any change in symptoms? You may want to consider keeping a journal, it can be very difficult to track the neuro type symptoms in particular, a written account helps you do that and tracking progress can help with anxiety issues and depression too.

It's forgot how long it's been since I've been glutened, but I think it's been about a week. Most of my problems are in my right eye. They're really dry too. I went to the doctor in January to get a b12 shot and my symptoms disappeared for a couple of days, including the dry eyes. Did you ever get this really uncomfortable symptom when you turned your head in front of a lamp? Like a light shining through the surface of your eye and blinding you a bit? I hate it. I think I have a bit of nightblindness too.

Most of the digestive symptoms dissappear quick. Loss of appetite, bloating, feeling full after eating a little bit, especially anything that's mostly bread, like french toast. The b12 sublinguals helped with most everything so that's why I associated it with pernicious anemia. After I started to get chest pain, I knew that it was somehow the sublingual tablets, but I didn't think it was because they had wheat in them. But yes, most of my constipation is gone, and I don't get weird stools anymore. Way back in November I would get these really dry bowel movements that were solid and looked strange, and they would fall apart when they hit the bowl. (TMI I know but this is a celiac forum)

When I get glutened, I start to lose feeling in my left arm/leg and my abdomen gets hard and uncomfortable. This happened a couple weeks ago when I accidentally ate these packaged "chow mein" noodles that contained wheat, and more recently when I went out to eat at a Japanese restaurant. That was on saturday so it's coming up on a week since I've been glutened and I'm starting to feel better. One other thing I noticed is that I start to get these creases on the side of my gums. I'm not sure if they're from my teeth but they start to slowly fade away when I don't eat gluten. There's also a whole list of other symptoms I could describe like my feet turning red in the shower, these tan lines on my legs that haven't gone away since september, pale nail beds both on my feet and hands, and sinus pressure that won't let me breathe through my nose correctly. I'm not sure if I've lost any hair, but way back in the summer, some of my friends joked around about how I was "bald" and I figured it might have been because I wear a hat all the time (I'm only 20 years old) but I'll just leave it at that for now.

[Lakme]

9 hours ago, Ennis_TX said:

Welcome to the forums. this place is great for support and you will find many of us have had similar issues. Thank god I never had the eye issues not being able to watch anime would have killed me -__- Still to this day wish I had the immortal body of Alucard. Anyway few links to help you out and give you some ideas, and make life easier.

 

 

THAT'S EXACTLY WHAT I WAS TALKING ABOUT! I used to watch anime all the time and one day my brain just gave up on me! It was so hard to get through the day not being able to do the things I love the most. When I first started to have problems it started to affect my gaming too. I have such great dexterity and suddenly my fine motor skills had gone to crap. More recently I even felt dizzy trying to type my password onto my Iphone and typing. It was god awful.

[GFinDC]

Welcome to the forum Lakme!

You can find a lot of good info on celiac testing at this link.

Open Original Shared Link

You do need to eat gluten for 12 weeks before the blood antibodies test.  A single slice of bread is enough gluten.  Since you have been avoiding gluten the antibodies in your bloodstream may have dropped to a point they can't be measures now.  But it's impossible to know for sure.  The celiac testing process is a celiac disease antibodies panel followed by an endoscopy to check for damage to the gut lining.  I suggest you at least get the blood antibodies tested.  If you can afford the endoscopy that is good to do also.

Another important test is for vitamin and mineral levels.  Celiac disease can cause malabsorption and deficiencies in various vitamins etc.

I am not clear on your skin issues?  There is a skin rash associated with celiac disease that can also be tested.  It is called dermatitis herpetiformmis or DH.  A diagnosis of DH is a diagnosis of celiac disease.  DH can be very itchy.

There is also a celiac condition called gluten ataxia where eating gluten causes affects on the brain or nerves.  People with gluten ataxia may have trouble walking and coordinating muscles.  Since it affects the brain that can cause various symptoms.  I'd be guessing if I tried to describe all the possibilities there.

It can be much harder/more unpleasant to get tested for celiac disease after being off gluten for a few months.  once you start feeling better and your body starts healing, the switch back to eating gluten can really knock a person down.  So it's better to be tested before stopping eating gluten.

[Lakme]

21 hours ago, GFinDC said:

I am not clear on your skin issues?  There is a skin rash associated with celiac disease that can also be tested.  It is called dermatitis herpetiformmis or DH.  A diagnosis of DH is a diagnosis of celiac disease.  DH can be very itchy.

I do not have DH, but if I have ever had it I would not remember. From what i've read I'm in the beginning demographic of when DH would appear (Which is apparently 20-40; I'm 20) but from what I can tell I don't have anything other than hyperpigmentation on my legs and a few bumps and similar things on my legs.

Never had DH. My aunt has a weird rash that doesn't go away and her doctor doesn't know what it is but I wouldn't know unless I saw it again. I have 2 family members with conditions related to celiac. My mother, who is schizophrenic, and my aunt who developed MS in her 50's and has had it for 20 years, which I hear is very rare. My mother's side of the family also has a host of issues including thyroid related and etc, but the general consensus was that these things were part of aging and nothing else. I myself have had things like post-nasal drip and other minor symptoms for years because I just assumed they were normal. There have also been a couple of instances where I ate something like a PB&J in my childhood and threw it back up for no reason. I'm known to be a picky eater, and I've always avoided certain foods and condiments that make me gag like ketchup. I'm probably just going on, but I never really felt too normal, but I just kinda figured everyone was like that.

[Ennis-TX]

1 hour ago, Lakme said:

I do not have DH, but if I have ever had it I would not remember. From what i've read I'm in the beginning demographic of when DH would appear (Which is apparently 20-40; I'm 20) but from what I can tell I don't have anything other than hyperpigmentation on my legs and a few bumps and similar things on my legs.

Never had DH. My aunt has a weird rash that doesn't go away and her doctor doesn't know what it is but I wouldn't know unless I saw it again. I have 2 family members with conditions related to celiac. My mother, who is schizophrenic, and my aunt who developed MS in her 50's and has had it for 20 years, which I hear is very rare. My mother's side of the family also has a host of issues including thyroid related and etc, but the general consensus was that these things were part of aging and nothing else. I myself have had things like post-nasal drip and other minor symptoms for years because I just assumed they were normal. There have also been a couple of instances where I ate something like a PB&J in my childhood and threw it back up for no reason. I'm known to be a picky eater, and I've always avoided certain foods and condiments that make me gag like ketchup. I'm probably just going on, but I never really felt too normal, but I just kinda figured everyone was like that.

I had a bunch of symptoms growing up that I just ASSUMED where normal. Cramps, 3-7 days of constipation, randomly throwing up half my meals a few hours after eating, always feeling nauseated after meals.....Used to think it was just normal. Then after a certain issue in my 20s the neurological manifestations and much worse gastro issues hit to where I thought I was going to die...sworn I had cancer and was running a bucketlist before diagnosis lol.

[Lakme]

19 hours ago, Ennis_TX said:

I had a bunch of symptoms growing up that I just ASSUMED where normal. Cramps, 3-7 days of constipation, randomly throwing up half my meals a few hours after eating, always feeling nauseated after meals.....Used to think it was just normal. Then after a certain issue in my 20s the neurological manifestations and much worse gastro issues hit to where I thought I was going to die...sworn I had cancer and was running a bucketlist before diagnosis lol.

I would have bouts of discomfort and nausea after eating certain foods, but I always assumed that it was because I was eating garbage like corn dogs and etc.

Did you ever have any symptoms of vitamin deficiencies like angular chelitis? I had this in high school all of the time, and when I tried to scratch it off my lips would get all red and it looked like I was wearing lipstick (I'm a guy you can probably understand how embarrassing this was). I went to the doc to get a b12 shot twice and most of my current symptoms cleared up, but it was temporary. I don't remember anything else besides having diarrhea often which I always figured was just because of my unhealthy diet.

[Melinda1981]

I am trying to figure out what is happening to me as well.

Here are my symptoms:

As long as I can remember I have had stomachaches. Severe constipation (no bowel movements for anywhere from 2-3 weeks). 

Then Sept. 2015 I had to have my gallbladder removed and that is when the real symptoms began:

-Anxiety increased significantly

-My bowel movements became more regular but varying to 3 to 4 times a day  to once every few days. Frequent stomach pain and nausea

-head to toe hives, usually my back starts itching first

-Dental health fell apart

-feet swell significantly when I eat wheat (usually only eat wheat)

-Regardless of change in diet and increased exercise I continued to gain weight. Really the only time I can lose weight is when I basically eat once a day. 

-Fatigue

I had my doctor check my thyroid and for celiacs. 

I just got my test results back and all blood work looks normal except low hdl

She tested my IgG and IgA, they look normal (these are the only tests that were given so far unless other tests have not come back yet)  Is there more I need to ask her to do? I have gone back and forth with eating gluten and did cut it back prior to the testing but it was not obsolete (I ate it for the last few days prior to taking the test). I notice a huge difference in the pain when I go gluten free, any advice for someone just trying to figure out what is making me miserable?

 

[Jmg]

On 3/27/2017 at 0:53 AM, Melinda1981 said:

Is there more I need to ask her to do? I have gone back and forth with eating gluten and did cut it back prior to the testing but it was not obsolete (I ate it for the last few days prior to taking the test). I notice a huge difference in the pain when I go gluten free, any advice for someone just trying to figure out what is making me miserable?

Hi Melinda and welcome

It would be a good idea for you to repost this in a new thread, that will make it easier for people to see your post and also make it easier for Lakme to see responses to his post also. You could ask a moderator to move this post or just repost it and ask them to delete it.

I won't reply further now except to say that from what you write the tests may have given an inaccurate response and given your gallbladder history you definitely should repost and seek the guidance of others here. Its entirely possible gluten is a problem for you. 

Best,

Matt

[Lakme]

On 3/26/2017 at 4:53 PM, Melinda1981 said:

I am trying to figure out what is happening to me as well.

Here are my symptoms:

As long as I can remember I have had stomachaches. Severe constipation (no bowel movements for anywhere from 2-3 weeks). 

Then Sept. 2015 I had to have my gallbladder removed and that is when the real symptoms began:

-Anxiety increased significantly

-My bowel movements became more regular but varying to 3 to 4 times a day  to once every few days. Frequent stomach pain and nausea

-head to toe hives, usually my back starts itching first

-Dental health fell apart

-feet swell significantly when I eat wheat (usually only eat wheat)

-Regardless of change in diet and increased exercise I continued to gain weight. Really the only time I can lose weight is when I basically eat once a day. 

-Fatigue

I had my doctor check my thyroid and for celiacs. 

I just got my test results back and all blood work looks normal except low hdl

She tested my IgG and IgA, they look normal (these are the only tests that were given so far unless other tests have not come back yet)  Is there more I need to ask her to do? I have gone back and forth with eating gluten and did cut it back prior to the testing but it was not obsolete (I ate it for the last few days prior to taking the test). I notice a huge difference in the pain when I go gluten free, any advice for someone just trying to figure out what is making me miserable?

 

You mentioned that you noticed a difference in pain when "Going gluten-free". If you did this before you got tested, especially for an extended period of time, this might unfortunately interfere with a diagnosis. I personally am not sure if I would want to be diagnosed as the symptoms are beyond debilitating, but it might be different for you.

Like Jmg mentioned, it might be more helpful if you created your own thread instead of replying to this one. I made this thread because I was curious about what diagnosed celiacs went through before they discovered they had the disease and I felt that I could relate to a lot of the terrible symptoms. Replying to this thread instead of creating a new one might interfere with the answers you're looking for, but if you ask me, it seems like gluten might be a problem for you even if you don't have celiac.