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

New But Been Lurking

Flasaltwater

Recommended Posts

Flasaltwater Apprentice
Flasaltwater
Posted

I am so so happy to have found to you.

I always felt so alone with all my digestive issues, rash etc.

here is some history about me

I am 5'2 weigh about 112. I have been as little as 93lbs can't seem to gain weight like a normal person even when pregnant unless I'm bloated of course then I look like I'm pregnant

always been Anemic most of my life, worse while I pregnant. Dr's always think I must be bleeding somewhere. Really??? for the last 30 years I don't think so. <<<Sarcasm well I have had a few times where there was bloody mucas in my diarrhea.

I have had diarrhea off and and on for 30 years mostly o.n I have had it for the last 15 yrs with out a break.

I have major smelly gas, bloating, stomach cramps, indigestion, horrible itchy rash on my butt and back now moving to my arms and my leg's as well. I have dental issues my hair is falling out. I have insomnia. I'm cranky most the time and depressed. I'm a walking nightmare.

I have been labeled with IBS, Depression, Anxiety, Low Serotonin. Sometimes I think we know more then the doctors. I can not get a Dr to listen to me they always want to just label me with IBS tell me to take Fiber. Wow I can't do that,Fiber kills me.

Oh and my period goes MIA occasionally, now I just don't have it hardly at all but that could be my age I am 47

My youngest child has type 1 diabetes other 2 seam to have no problems.

I am on my 4th day of gluten free diet and so far I have noticed that my moods have changed I'm not as irritable seems my indigestion is calming down and I don't seem to be bloating as bad. This is it so far but I have been going untreated for a long long time so this may take a while from what I have read.

I am seriously thinking about ordering a test from a lab online since the Dr's here are uneducated on this disease I guess I'll have to take matters into my own hands If I want to be normal again. Whatever that is, not sure I remember.

Do you think my symptoms fall in line with Celiac's disease or Gluten sensitivity?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound very much like you could be in the right place. If you want to be tested for celiac you need to immediately go back on gluten until that testing is done. Your child with type 1 diabetes should also be tested. Testing of Type 1s for celiac is advised by the NIH.

When you are done with all celiac related testing then do give the diet a good strict try for at least a couple of months even if the tests results are negative.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

I am so so happy to have found to you.

I always felt so alone with all my digestive issues, rash etc.

here is some history about me

I am 5'2 weigh about 112. I have been as little as 93lbs can't seem to gain weight like a normal person even when pregnant unless I'm bloated of course then I look like I'm pregnant

always been Anemic most of my life, worse while I pregnant. Dr's always think I must be bleeding somewhere. Really??? for the last 30 years I don't think so. <<<Sarcasm well I have had a few times where there was bloody mucas in my diarrhea.

I have had diarrhea off and and on for 30 years mostly o.n I have had it for the last 15 yrs with out a break.

I have major smelly gas, bloating, stomach cramps, indigestion, horrible itchy rash on my butt and back now moving to my arms and my leg's as well. I have dental issues my hair is falling out. I have insomnia. I'm cranky most the time and depressed. I'm a walking nightmare.

I have been labeled with IBS, Depression, Anxiety, Low Serotonin. Sometimes I think we know more then the doctors. I can not get a Dr to listen to me they always want to just label me with IBS tell me to take Fiber. Wow I can't do that,Fiber kills me.

Oh and my period goes MIA occasionally, now I just don't have it hardly at all but that could be my age I am 47

My youngest child has type 1 diabetes other 2 seam to have no problems.

I am on my 4th day of gluten free diet and so far I have noticed that my moods have changed I'm not as irritable seems my indigestion is calming down and I don't seem to be bloating as bad. This is it so far but I have been going untreated for a long long time so this may take a while from what I have read.

I am seriously thinking about ordering a test from a lab online since the Dr's here are uneducated on this disease I guess I'll have to take matters into my own hands If I want to be normal again. Whatever that is, not sure I remember.

Do you think my symptoms fall in line with Celiac's disease or Gluten sensitivity?

Wow! Yes, you do sound like you have Celiac. You must go back on gluten NOW if you want an official dx! The lab tests and the biopsy for confirmation will NOT be accurate if you have been gluten free for any period of time before the tests (especially the blood tests). I was gluten free for 2 weeks before my GI ordered a scope, so now I am forced to eat gluten for a MONTH so that I can (hopefully) get an accurate dx.

And get the kiddos checked, too. The sooner you know, the quicker you can get on the right track. ;)

Rocketlegs Newbie
Rocketlegs
Posted

Wow! Yes, you do sound like you have Celiac. You must go back on gluten NOW if you want an official dx! The lab tests and the biopsy for confirmation will NOT be accurate if you have been gluten free for any period of time before the tests (especially the blood tests). I was gluten free for 2 weeks before my GI ordered a scope, so now I am forced to eat gluten for a MONTH so that I can (hopefully) get an accurate dx.

And get the kiddos checked, too. The sooner you know, the quicker you can get on the right track. ;)

Do we really need an official diagnosis though? Can't we just go off gluten for the rest of our lives? For as absolutely horrible I was feeling, I don't ever want to eat gluten again even to get an 'official' diagnosis!

sa1937 Community Regular
sa1937
Posted

Do we really need an official diagnosis though? Can't we just go off gluten for the rest of our lives? For as absolutely horrible I was feeling, I don't ever want to eat gluten again even to get an 'official' diagnosis!

I don't blame you for not wanting to feel ill! The question I would have is would you be willing to stay on a strict gluten-free diet for the rest of your life without an "official" diagnosis? That's not saying there's a guarantee you would get a diagnosis even if you went through all testing. But a few months or years down the road are you going to regret not going through with testing? It's a question only you can answer. You'll find there are a lot of folks here who are self-diagnosed and feel so much better after going gluten-free.

Personally I went the whole nine yards as I knew my daughter had a problem with gluten. So if I didn't take it seriously, would she? She just had the celiac panel (the newer DGP test, which was positive) and went gluten-free as soon as she got her results. Skipped the endoscopy. She's fine with it as am I.

ravenwoodglass Mentor
ravenwoodglass
Posted

Do we really need an official diagnosis though? Can't we just go off gluten for the rest of our lives? For as absolutely horrible I was feeling, I don't ever want to eat gluten again even to get an 'official' diagnosis!

Whether to go for the official diagnosis or not is wholly up to you. If you can stay strict with the diet without it then go for it. For some of us the reaction our body has when we consume gluten and the way we feel off it is enough proof.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

I don't blame you for not wanting to feel ill! The question I would have is would you be willing to stay on a strict gluten-free diet for the rest of your life without an "official" diagnosis? That's not saying there's a guarantee you would get a diagnosis even if you went through all testing. But a few months or years down the road are you going to regret not going through with testing? It's a question only you can answer. You'll find there are a lot of folks here who are self-diagnosed and feel so much better after going gluten-free.

Personally I went the whole nine yards as I knew my daughter had a problem with gluten. So if I didn't take it seriously, would she? She just had the celiac panel (the newer DGP test, which was positive) and went gluten-free as soon as she got her results. Skipped the endoscopy. She's fine with it as am I.

I will probably order the test, as far as the endoscopy I doubt ill put myself through that. I can do the diet if it makes me feel better which it does. I am sick of being sick and trying to cover that there is really something wrong. I have had coworkers at my job say to me oh I wish I was as small as you. Please! if they only Knew. I use to lie and say it was my over active metabolism. I know where every public bathroom is in my town I would love to live life and not have to think of these things. I hate the fact that I have to eat gluten again to be honest it scares my. My indigestion has gone I was taking 150 mg of Zantac 2 times a day before starting the diet. I still have the running to the bathroom and the rash and for whatever reason I am breaking out more. GO figure!! But the gas and the bloating has calmed down a lot this is huge for me. Not to be gross but I could run my family out of a room with my stinky gas. I just want to be normal this is no quality of life for anyone. I am happy to have the diet its better then having to live with the pain.

Sorry if I ramble I have lot of anxiety built up : )

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

Celiac.com Sponsor (A8-M):


beebs Enthusiast
beebs
Posted

Do we really need an official diagnosis though? Can't we just go off gluten for the rest of our lives? For as absolutely horrible I was feeling, I don't ever want to eat gluten again even to get an 'official' diagnosis!

I was talking to the Coeliac society here in Oz about this very thing the other day - basically they are very close to a vaccine - 5 years maybe less, only those who are officially diagnosed will be elligible for it....I haven't got an official diag - doh!!!! I think people should keep that thought in their mind when deciding on an official diag vs gluten free without one.

Rocketlegs Newbie
Rocketlegs
Posted

My aunt, who has gluten issues, said that if you get diagnosed with celiac you'll have a hell of a time getting health insurance. I pay for my own policy now and they're already cranky about sinuses (had sinus surgery in 2004 but anything to do with the head now they won't pay for if it could remotely be sinus related). So I think I may just do elimination and if I feel better keep avoiding gluten.

beebs Enthusiast
beebs
Posted

My aunt, who has gluten issues, said that if you get diagnosed with celiac you'll have a hell of a time getting health insurance. I pay for my own policy now and they're already cranky about sinuses (had sinus surgery in 2004 but anything to do with the head now they won't pay for if it could remotely be sinus related). So I think I may just do elimination and if I feel better keep avoiding gluten.

Every time I hear about your insurance issues in the US I always feel like "What tha"? You are paying them tonnes of money and they are cranky at you??? So unfair!

Archived

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

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

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
×
×
  • 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.