Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


Maybe I Do? Maybe I Don't Have It? You All Can Have An Idea

Rate this topic

Recommended Posts

To be honest, i am so tired of writing my symptoms online. Nothing ever seems to help.

i figure i can post my story here, and maybe some of you can understand it, and see something similar, and suggest something, and so on.

i am a 27 year old male, and have been suffering from weird symptoms for the past 10 years.

I actually have never looked into stomach problems, Even though i've been constipated (slow digestive track) long before my major systems started to appear.

I've had bad headaches ALL of my life. Even when i was a kid. Had my first migraine with aura and nausea when i was 16, which totally freaked me out. After that i often have headaches and migraines (randomly) and see flashes of light.

when i was 18 I was unable to sleep for long period at a time, and for some reason developed dry eyes and light sensitivity. Soon after dry mouth, and severe fatigue. No mater how long i slept i was still very tired. This was in 2002.

i went to the doctor then, he took much blood, didn't have diabetes or anything. He thought i may have a thymus gland disorder because he heard weird stuff in my chest, and i guess maybe i did have some weird stuff wrong with my blood that he didn't tell me? Not sure, i dont remember.

I ended up not having it, and he basically prescribed me allergy pills (for the chest congestion he heard), and said i was maybe depressed and gave me some free anti depressants.

Soon after my years became sensitive. usually ringing, and sensitive to sound, especially high treble. Around this time i decided to start going back to the doctor, bascially did a simple blood tests for the normal stuff like diabetes and came back find again. this was in 2003-04.

I pretty much lost hope in the doctors, so i just continued to live with my symptoms.

Around 2005 i had a headache the lasted an entire week. I was really freaked out by this. I also noticed then i had thinking/memory problems, and it was actually really freaky. I remember meeting someone, and then not being able to remember their face (scary), and then someone was talking to me and asking me questions, and i totally didnt remember what they said. This wasnt some high depressed time for me. Yes i wasnt super happy because of my symptoms, but i wouldnt say i was super sad, and hating life.

Due to the headache i went to the doctor again, They did a catscan and things showed normal.

in 2006 my symptoms got much worse. I became super tired one day after having a cold. I literally slept for 2-3 days (waking up sometimes for 15 mins and so) before i freaked out because of it and forced myself to stay away. Ever since then my brain fog and headaches have been much worse.

Around then i decided to give doctors another chance. I went in. they took blood, ran tests, and said everything was fine still. Suggested Depression yet again. :| That was pretty much the last time i went to the doctor for this.

For the past 2 years i pretty much gave up finding a cause. i figure i'll keep getting worse until i just become brain dead and die, ha or something.

i decided to give it another go. For the past 2 weeks i've been so tired, during this time i noticed my stomach has been hurting more than usual, bloated, and also the brain fog is worst, so im starting to really think that all of it is related.

In 2002 when i went to the doctor, he pretty much ignored my constipation symptoms. Which is sad.

Stomach problems would make sense. I grew up drinking only soda/pop, and eating lots of sweets. and there were times in childhood where i almost passed out but not realy.

I also noticed years before i had weird symptoms that my stomach would hurt bad after drinking sweet drinks. Such as the fruit drinks tropicana, ocean spay, and so on.

I noticed my eye and mouth, and fatigue is connected to my stomach. if i eat alot of pizza (which i can eat, love that stuff) and feel bloated for a week, i noticed i am more thirsty, and eye dryness and such is more.

Another problem i've noticed is when i drink milk, my stomach will hurt bad, and it'll actually make me goto the bathroom, and i basically spray water and crap out of my bottom, nasty i know, but its actually nice considering how rarely i goto the bathroom.

To talk about constipation: I maybe goto the bath room once or twice a week if im lucky. Sometimes i can go more times than that but its rare.

My stool is using soft, light colored, and fatty or waxy i would say. It takes me a while to get it clean, (gross i know). There are sometimes when it does get hard, and its hard to get it out, but those are rare.

also with the dryness, i have dry skin as well. Dandruff, feet became dry.

One thing i love: cappuccinos. I started drinking this alot, To think about it i started drinking them almost daily a little bit before my major symptoms started happening, but i dont think they are the cause? I noticed the 12 oz of what i drink has 45g of carbs, but i dunno.

Alot of time when i drink cuppichinos my stomach hurts, super blaoted, and i have bad gas, and it almost leaky like gas where sometimes its wet, but for some reason i still drink them. I guess because i love them, and with all this crap going on, i wanna enjoy something. and to be honest, i never really thought that they'd be causing my problems. Even though, i've noticed alot of this stuff does trigger my migraines.

I am always so tired, man i hate getting up to goto work. The energy drinks hurt my stomach bad too, and sometimes even make me more tired, which means the brain fog gets worse.

I would say the brain fog is my worst symptom. I could live with everything else, but i can live with not being me. My head always hurts, its hard to think, recall things, and just have a personality and imagination. I so miss being myself. if giving up sweets, and junk food will help me, i will gladly give it up.

The only things that make me not sure if is any of these syndromes is because i dont usually get rashes, well sometimes i get a rash that stings and has a blister, which i think is a spider bite, but i get these randomly, and never have a spider on me, so i dunno what thats about.

I get tiny red spots randomly, never really itchy or bothersome, and they are random and not all the time So i cant really say i have rashes.

I also do not vomit.

Well, i take that back. Every so often i'll get a weird sickness, which i dont understand what it is. it's like the flu, but not really. It only lasts a day or so, and i feel like i have to puke, but its always only stomach acid. It's really weird. I've only started having that since i've started having these symptoms, and its a rare thing. only happened a few times.

so i think one of the major symptoms in having a food allergy is vomiting up the food right?

I also never really have joint pain. I have weird pains sharp random pains that happen randomly on my body, but they go way and come back.

when i was a kid i was very active, and many times my LEGS would hurt like crazy. i never figured that out. maybe that was from this intolerance when i was little?

I think with my slow digestive track, its hard to know if it is a food allergy, because nothing really happens soon after.

So im considering celiac disease, gluten intolerance, fructose intolerance (since i used to get bad stomach aches when i ate something sweet, and the milk problems),

I know anxiety makes my symptoms seem worse, which is why i hate trying to find a cause, but i quit trying to find a cause for hte past year or so, and was just living with it, and i got worse, and i dont want to get any worse. time to get better.

Actually i havent even heard of fructose intolerance until i was writing this and did some more research. Weird. I think alot of these are connected though right?

also after i started having this symptoms i put on alot of weight. i went from like 140lb to around 230lbs and been stuck around there ever since. I actually gained weight so quickly i developed many stretch marks which i know is what happens when u gain weight quickly.

I know that celiac is ab ad gene, so if you have it, someone else in your family must have it? Which no one in my family does.

My mom has weird symptoms, but they dont seem to bother her or even worry her. So maybe he has something. She doesnt seem to have the brain fog (thank god, no one deserves to have it), but she is loosing her hair, NEVER had solid stool. She always complains about this. Always runny, and has vision problems as well.

She used to have bad headaches, but had a pituitary tumor removed that solved many of them, but she says she still gets normal ones. She eats alot of junk food though, and only drinks Pepsi.

i am just trying to get some ideas before i start making doctors appointments agian. I really dont have any money to be wasting on doctors fooling around with me and not being serious or honest with me. I so hate that.

I am debating whether or not to buy the Ceciac home test kit. Its like $80 shipped, which isnt too bad.

in the meantime im starting to drink water alot more (been drinking my cappuccinos, and diet mountain dew for the past years with water here and there, but could go days without pure water, which now i am fully changing). So i'm going to be taking some diet steps that should be healthy.

It's hard to avoid junk food though, i would really like this stomach pain and bloating to go away. So i guess water and healthy eating is the way to do that. I did buy tons of green apples and bananas :P

Do you all have any ideas? Does this story kinda sound like yours?

Share this post

Link to post
Share on other sites

Hello, and welcome.

Reading through your story, it certainly sounds like you are possibly gluten intolerant and, along with it, lactose intolerant. Gluten destroys the lining in the small intestine which is where the milk sugars are digested and until it heals you will be unable to digest lactose. The symptoms of water diarrhea and stomach cramps after having milk are classic for lactose intolerance.

The brain fog and headaches are pretty classic neurological symptoms for gluten intolerance. Constipation (sometimes alternating with diarrhea) is very normal for celiac, as is anxiety and/or depression and weight gain (which is just as common as weight loss), bloating, skin problems, rashes (which may or may not be deermatitis herpetiformis). I would say you definitely have enough symptoms to ask a doctor to test you for celiac disease. Actually, I wouldn't ask, I would demand. Tell him you have wasted ten years of your life living with these horrible symptoms and it is time to find the cause of them and you believe it is celiac disease. I don't know your insurance situation, but you will get a more definitive diagnosis this way than ordering a home test kit. But you do have to keep eating gluten until you are tested or you will affect the results. The following are the tests which constitute the celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

I would urge you to not waste any more years of your life but go for the diagnosis and get on with living. :)

Share this post

Link to post
Share on other sites

thanks for your reply. im working on adoctor visit. no insurance right now, but need to get it done.

stomach is still hurting, and full feeling today. Ate pizza yesterday which im gonna regret for the next week. had bad brain fog again today, and it got super worse while at work.

I learned of some more health info. When i was a baby my mom said i couldnt eat baby food, or drink normal milk. She said i always threw it up and was a sick baby.

doctors back then thought i had cystic fibrosis as a baby, which turned out to be false. and never really found out why i couldnt eat normal foods as a baby.

So alot of this is making sense if this is whats wrong with me. I just got back from walmart. Damn its hard finding gluten free food. alot of the name brands carry gluten free versions.

I got some eggs, gluten free chex cereal, salad, gluten free salad dressing, lays potato chips (says gluten free). Was going to get some meat, but i think it might be too hard on my stomach to eat much meat right now. need to eat this light stuff. I guess eggs are considered meat anyways. Also got apples and bananas.

i thought going gluten free was going to be hard due to not knowing what to eat, but i guess its still pretty easy. I'll get better though and discovery whole meals i can make.

I'm just happy alot of stuff is starting to make sense. :D

Share this post

Link to post
Share on other sites

Hi blank. Just remember that if you go gluten free now you will not get an accurate test result. You need to be eating a full gluten diet when you are tested for the results to be valid - something like three to four slices of bread or equivalent per day. :o

Share this post

Link to post
Share on other sites

Rashes could be DH, the skin form of Celiac.

Wow. You are a poster child for Celiac disease and I'm not even a Dr.!

I hope you get to got gluten free and that is clears your brain fog as effectively as it did mine.

One thing that sounds paralell to my own story is the long years of illness. I also want you to be aware of salicylic acid sensitivity. It happens to 1 in 100 people and you can have it in addition to Celiac or Gluten Intolerance. Your headaches- Did you take anything for them? I did. I took Ibuprofen and it made me sicker.

Sores can be caused by Celiac or Salicylic acid sensitivity or Celiac related scurvy...the vitamin deficiencies can get you.

If you are also salicylic acid sensitive then you would be sensitive to yellow food coloring, (mountain dew) and red food coloring and benzoates which are preservatives used in most drinks. Hey, it took me years to figure this out. I hope it isn't true for you but I have both. And my story reads a lot like yours. Got 50% better eliminating salicylic acid and 50% better eliminating gluten.

Read about it and see if it applies to you.

Thank you for sharing your story. I hope you feel better soon. I don't even know if you use salicylates, but if you are sensitive to more than just gluten, your reactions to drinks could be the sals. It can cause migaines and brain fog too.

I'm excited for you because you could be feeling really better soon if gluten is the answer.

Share this post

Link to post
Share on other sites

Wow I ne er heared of salicylates intolerance, not sure if I have it or not, I noticed yesterday that my head got worst after drinkin some lemonade (minute made) which I thought was odd since there is no caffiene in it. Maybr its the coloring? Or fructose intolerant, which I've suspected for a while.

But I'm not tooo sure about sylicyates because I usually live off diet mountain dew, and I never notice my head get worse after drinking it. My digesttive track is so slow its hard totell really what foods do what.

Today will be my first full day of nogluten, my stomach still feels like there is a huge ball in it. Slightly hurts, haven't been hungry today or yesterday, not really stressed either, just want to sleep so tired.

Actually ibuprofen does make me feel a little sick. Usually take tylenol, but tylenol doesn't really help with anything so I have to take both sometimes so I don't get too muc of one, and usually that doesn't even help.

My head feels soweird lately. Had brain fog for 6 years now but its been worse snce my tomach started hurting more, and seems to have a fuzzy tingling, vibration buzzing feeling all over my head. Weird to explain.

My boss makesme mad lol, I thought I only had two days left of work before I was off, and he just game me another day! Ahhh!

Thanks for all replies.

Share this post

Link to post
Share on other sites

Your symptoms sound very similar to what I used to have, my recommendation is to at the very least avoid dairy and wheat for a week and see how you are.

Pizza will be the very worst thing for you, if you happen to be diary and wheat/gluten intolerant. Be careful with cereals too, I don't know what it is but some gluten free cereals make me double up in agony with pain.

Share this post

Link to post
Share on other sites

I would recommend you keep eating wheat and get the Coeliac blood test. You wont get an accurate test result if you stop eating wheat.

Stop drinking crappy soda drinks - they are full of rubbish! :) Eat whole foods. Get yourself breath tested for fructose malabsorption and lactose intolerance.

Good luck.

Share this post

Link to post
Share on other sites

I would recommend you keep eating wheat and get the Coeliac blood test. You wont get an accurate test result if you stop eating wheat.

Stop drinking crappy soda drinks - they are full of rubbish! :) Eat whole foods. Get yourself breath tested for fructose malabsorption and lactose intolerance.

Good luck.

i think i'll keep up the gluten free thing til next week (if i dont notice any improvements with anything).

Im thinkin many of my problems might just be caused by being dehydrated. Never drink water.

My stomach has improved, still hurts, especially on the side if i do something (i guess kidneys or whatever) but this could be due to me not eating as much as usual, or drinking pure water only for the past few days.

I dunno, i also had weird anxiety lately because my visual snow is getting worse, along with the headache i had for the past few weeks (headache was bad the first few days along with worsen brain fog, but its minor now and i can barely tell besides the migraine like symptoms such as Visual snow

i am looking into buying my own insurance (work doesn't provide it) seems to only be $1xx or so a month, maybe its worth it, maybe not. then i plan on going to the doctor. may just call up the local clinic and see what the prices are.

I think you're right about the fructose and lactose intolerance. not sure if i have gluten intolerance, but i know for a fact those upset my stomach many times.

thanks all.

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...