Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I Must Be Crazy, Or Am I?

penguin

Recommended Posts

CarlaB Enthusiast
CarlaB
Posted

With lots of gluten, I feel intoxicated the brain fog is so bad, I'm more likely to be constipated than have d, I have extreme fatigue so I lay around a lot. After some time like that, I get so that I feel unsafe driving because of the brain fog and lightheadedness. I have almost fainted. When we were Christmas shopping during my gluten challenge, I would have to sit down on the floor so that I didn't fall down. I remember knocking down a bunch of videos at Best Buy, my husband asked what happened, and I just pretended I had been clumsy, but I really had just caught myself before I fell down (he gets so worried), but I didn't trick him ... I had to sit down, then he helped me out of the store. It wasn't this bad at first, I felt a lot like you have described, but it got very bad towards the end.

I often joke now that I don't need alcohol to feel intoxicated, I just need a biscuit, but that I'll get a worse and longer hangover from the biscuit!

And, as you say, a normally functioning person would not feel that different getting off gluten. Although, my hubby can feel a bit gassy if he eats a lot of gluten ... but he doesn't have nearly the symptoms I have!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

you don't have to be consuming gluten for them to test for chrons or colitis, AND you can have those along with gluten intolerance or celiac... and honestly, to me there is NO difference between gluten intolerance and celiac. Yeah, technically celiac is confirmed villous atrophy, but what if you are not to that point YET? Like Ursula said, are you going to continue eating gluten and possibly poisoning yourself UNTIL you have a positive result? NO? Well then why do it for a challange. To me that's just silly. And you did show improvement on the diet. That's good enough for me. They can continue to rule out other things without you having to put gluten back into your body. That's what doesn't make sense to me.

Mango04 Enthusiast
Mango04
Posted
I'm really sleepy, and foggy. I'm surprised I'm not sick. Maybe gluten isn't my problem?

C, weight gain, sleepiness and fogginess can all very well be gluten symptoms. If you don't feel great, overall, all the time when you're back on gluten, you could should still consider gluten being a problem. I seem to notice a lot of people who go back on gluten or dairy, and they feel kind of "yuck" and have weird new symptoms they can't figure out, but just since they don't have violent reactions right after they eat the offending food they don't attribute their problems to those foods.

Okay I'm rambling so I'll just say...I hope you feel better and get to the bottom of your health issues soon!

:)

penguin Community Regular
penguin
Posted
  • Author
you don't have to be consuming gluten for them to test for chrons or colitis, AND you can have those along with gluten intolerance or celiac... and honestly, to me there is NO difference between gluten intolerance and celiac. Yeah, technically celiac is confirmed villous atrophy, but what if you are not to that point YET? Like Ursula said, are you going to continue eating gluten and possibly poisoning yourself UNTIL you have a positive result? NO? Well then why do it for a challange. To me that's just silly. And you did show improvement on the diet. That's good enough for me. They can continue to rule out other things without you having to put gluten back into your body. That's what doesn't make sense to me.

I know that I can have all of the bad digestive things at once. My line of thinking is that as long as they're sticking cameras into my digestive tract, they may as well do a biopsy, and I'm not going through all of that gluten-free. They're going to have to come at me from both ends to make a colonoscopy worth my while.

You know what the biggest difference between celiac and gluten intolerance is? Insurance. I didn't self-diagnose, my doctor diagnosed me, and therefore, it's on my permanant record. I want a second opinion to know it's correct. If there's any way to take that pre-existing condition off my record, that would be great.

Will I go back to the gluten-free diet? Probably. I like having the full use of my brain and body.

It may be silly, but I'm simply not confident in the way that I was diagnosed. After nearly four years of being sick, I probably do have atrophy if I have celiac, and hopefully they can catch it. If they don't, so be it.

I know you care and that you don't want people to make themselves sick, but this is something I have to do for myself. :)

Guest nini
Guest nini
Posted

oh hon, don't get me wrong, I am supporting your decision to do this, I just have had it about up to here with the medical community and I have no faith in them right now. That's just me. I have it on my permanent record too and have been denied insurance, which really does suck and I can completely understand... What gets me with insurance companies is that they consider this a bad news pre existing condition but the majority of us are much healthier WITH this dx than without. I'm not saying you shouldn't do this, I'm just thinking out loud about why it should even be neccesary. Not just for you, but for anyone.

You have to do what is right for you no question, and I am 100% supportive of you, I'm just guilty of thinking out loud (in print) :rolleyes:

Lister Rising Star
Lister
Posted

i know its not a answer for evevryone but you should consider looking into candida as well/ unless you became perfectly fine gluten free but if u still had symptoms after 3 months look into that,it can cause sensativity to foods not intolerancy but it can cause sensativity, and lots of other things. im seriuse though eat a cheesy gordidta crunch for me mmmmmm

Guest nini
Guest nini
Posted

oh yeah. I'm still having issues with Candida three years after going gluten-free. I had real bad systemic candida from years of antibiotic use.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted
  • Author
i know its not a answer for evevryone but you should consider looking into candida as well/ unless you became perfectly fine gluten free but if u still had symptoms after 3 months look into that,it can cause sensativity to foods not intolerancy but it can cause sensativity, and lots of other things. im seriuse though eat a cheesy gordidta crunch for me mmmmmm

There is definitely taco bell in my plans, no worries! I'm not nuts about the gordita crunch though...

About candida, I don't really believe that it happens all by itself. I think it happens as a secondary kind of infection to a larger problem. Candida is always present in your body, so when the good bacteria that keeps the yeast at bay gets flushed out of your system or is killed by antibiotics, the candida can take over. That's why yeast infections happen.

Thing is, a lot of the symptoms are the same in celiac and candida, and I kind of think the celiac (or other autoimmune thing) causes the candida more often than not. Your immune system has to be comprimised somehow.

I think I've only been on antibiotics maybe 3 times in the last few years, always for short courses (usually a bladder infection). I will admit that I was doing really well until I had to take strong antibiotics for a cellulitis infection. That was only 5 days though. I don't crave sugar anymore or anything.

Plus, the classic candida symptoms that are more exclusive to candida infections, I don't have. Thanks for the suggestion though!

schuyler Apprentice
schuyler
Posted

Chelsea,

I understand exactly where you're coming from. If you are not comfortable with the way you were diagnosed, then do whatever is necessary to confirm your diagnosis. I know that I'd do the same thing if I was unsure. Good luck with everything.

Danielle

CarlaB Enthusiast
CarlaB
Posted

You've already determined you're sensitive to gluten ... you want celiac removed as a pre-existing condition ... maybe having the endoscopy gluten-free is the way to go ... just a thought. I KNOW I have a gluten problem, but my endoscopy was "negative" therefore the medical community considers me "healthy" based on their definition of it. I guess I got lucky! <_< My internist has my enterolab results in my file, but I don't think that qualifies as a diagnosis, does it?

penguin Community Regular
penguin
Posted
  • Author
You've already determined you're sensitive to gluten ... you want celiac removed as a pre-existing condition ... maybe having the endoscopy gluten-free is the way to go ... just a thought. I KNOW I have a gluten problem, but my endoscopy was "negative" therefore the medical community considers me "healthy" based on their definition of it. I guess I got lucky! <_< My internist has my enterolab results in my file, but I don't think that qualifies as a diagnosis, does it?

With the enterolab thing, I guess it depends on what your doctor and insurance company think. Since it's not widely accepted by the medical community, you're probably ok.

I hadn't thought about being gluten-free to get the pre-existing condition taken off, not a bad idea, really. I'm ok with having a celiac diagnosis, as long as I actually have celiac. I see it as a win-win. If the biopsy is positive, then I really have celiac and know exactly what I'm dealing with, and that I risk passing it on. If it's negative, then I'm just intolerant, my insurance doesn't care, I have some peace of mind, and I can go on with my life.

CarlaB Enthusiast
CarlaB
Posted

Technically speaking, I am only intolerant. I do, however, have the celiac symptoms, but only the intolerant genes. So, I could fall into the 5% of celiacs who do not have the genes, I could just be intolerant. Since I'm barely absorbing my food, I'd say there is some kind of intestinal damage they just didn't find. I also get joint pain, brain fog, etc. Whether it's celiac or gluten intolerance, it's just as serious to your body if you ingest gluten.

My point is that if you have the attitude that it's "just" a gluten intolerance like it's something less than celiac, then 20 years down the line when you're my age, you might see more serious consequences.

Okay, now I'm sounding like a Mom, but I can't help it ... :blink:

penguin Community Regular
penguin
Posted
  • Author
My point is that if you have the attitude that it's "just" a gluten intolerance like it's something less than celiac, then 20 years down the line when you're my age, you might see more serious consequences.

Okay, now I'm sounding like a Mom, but I can't help it ... :blink:

Understandable :)

I didn't mean to undermine an intolerance, although it is a bit more "just"-y than celiac. I'd still be gluten-free, since it would make me feel better. I really don't like feeling stoned all the time :ph34r:

I also want babies, and I don't want to interfere with being able to do that! :D

Becky6 Enthusiast
Becky6
Posted

I am nost sure if I have celiac but at the least gluten intolerance. I also have micropscopic colitis. And many people deal with colitis with a gluten free diet. Don't quote me but I have read that Microscopic colitis is on the same gene as celiac. Not sure but if you do have colitis you could still need to be gluten-free to control it. Good luck!!

CarlaB Enthusiast
CarlaB
Posted

I don't know that I'd consider it more "justy" than celiac. I guess it would depend on the severity, if there is a varying severity with gluten intolerance. My problem is very systemic, and my absorption after almost three months gluten-free was just barely within limits. I kinda feel like I just caught it before I was too damaged because it's pretty clear there was damage judging by the absoption, depression, low thyroid, joint pain, off and on anemia, etc. which was in addition to the intestinal symptoms and losing a pound a week for four months. I also had numerous emergency room visits due to dehydration over the past 25 years, even though I'm constantly drinking water. I also had very difficult pregnancies. If it were a lesser illness, I wouldn't think it would have those systemic symptoms, rather just the intestinal ones, more like an allergy.

I actually think that it's more likely that rather than being a lesser illness than celiac, it was just caught before it fit the definition of celiac. It seems that most of those on this site who were diagnosed with damaged villi were VERY ill! I was on my way there ... fast ... My enterolab results indicated an autoimmune reaction, not just the gluten antibodies. So, maybe you would be correct for someone with the gluten antibodies alone.

I'd consider gluten intolerance to be more like finding cancer early. It's a little easier to treat and more likely to completely heal, but still needs to be seriously treated before there's irreversible damage.

That's just my opinion ... for what it's worth. BTW, don't take this as me thinking you are undermining gluten sensitivity, I just want to point out that it can be very serious in it's own right and you can do damage to your body even if it is "just" gluten sensitivity.

penguin Community Regular
penguin
Posted
  • Author

My body is definitely not happy with me. If anyone ever decides to do a gluten challenge, try some tabouleh! Good Lord, I had some last night and was SO bloated and my neck hurt. Nothing like straight bulgar wheat to tear you apart! It may have been that and the combination of the two Taco Bell chalupas and taco, though.

I have an insatiable appetite! I just had a big bowl of cream of wheat and now I'm eating pizza because I'm still hungry. No wonder I'm gaining weight. I usually don't have such a huge appetite! Sheesh.

What sucks is that I'm still getting the D cramping, just without the D. I'm still having to go rather often, but it's a lot more difficult. Where did I put those prunes? :rolleyes:

Carla - I didn't mean to undermine. The way this is going, I know that gluten certainly isn't good for me. I'm tired, bloated, ravenous, and foggy. I can say with 98% certainty that I'll go back to the diet once this is all over. Intolerances are bad news also.

key Contributor
key
Posted

ChelsE,

It is possible to that the gluten free diet helps people with IBS, so it helps alot of people even if they don't have celiac. It sounds like you are having some symptoms from eating wheat for sure. My blood tests were borderline for celiac and my son has it, but it is hard for me too. WHen I am not feeling better at times, I think it isn't celiac and something else, so I test myself about every two months. I understand your dilemna. I have never made it, but for a couple meals eating wheat, because it makes me SO sick. I swear that can't be in my head.

GOod luck and be sure to follow through while you are actually eating it.

Monica

CarlaB Enthusiast
CarlaB
Posted

Try some seitan ... I think it's almost straight gluten!! It makes good tasting fajitas.

VydorScope Proficient
VydorScope
Posted

Wow Chelsea! I missed this thread till just now. You being carefull of your Hyposugar Stuff while you do this?

penguin Community Regular
penguin
Posted
  • Author
Wow Chelsea! I missed this thread till just now. You being carefull of your Hyposugar Stuff while you do this?

Yes sir, I am! I knew about the trademarked condition long before I knew about gluten-free, although my trademarked condition is much worse on gluten. It runs straight through my blood! I'm keeping watch on myself ;)

VydorScope Proficient
VydorScope
Posted
Yes sir, I am! I knew about the trademarked condition long before I knew about gluten-free, although my trademarked condition is much worse on gluten. It runs straight through my blood! I'm keeping watch on myself ;)

Okay when you said you were on major "carb overlaod" I got worried!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.