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

Could I Have Had This All My Life?

Guest DanceswithWolves

By Guest DanceswithWolves
in Coping with Celiac Disease

Recommended Posts

Guest DanceswithWolves
Guest DanceswithWolves
Posted

Now that I look back through my life...am I just over-obsessing to think that maybe I've been Gluten-intolerant all my life?

I always had "nervous problems" as my parents would call it. When I was a little kid I used to pull at my ear lobe until it was infected, I used to lick my lips and cover them with Chap stick til they were inflammed. I used to scratch my arm til it was pimply and moist. So, what I'm wondering, could I have been mis-diagnosed and maybe I had reactions to Gluten all this time? I always blamed everything on "Allergies". I've always had sinus problems, itchy and watery eyes, rashes.

As I grew older, I've had emotional breakdowns when I was sober and drunk. Mental fog and fatigue, confusion, depression, scattered thoughts, but also times of complete joy and a sense of carefreeness. I mean, I ate bread all my life, fast food, pizza with Ritz crackers was a personal fav!

Basically, I'm trying to figure out is Celiac Disease hereditary from your parents? I had someone tell me on another health site board that because my parents background is from western Europe it's a good possibility.

Could I have had this all my life and not know it or am I just screwed up in a mental sort of way?

I've read the some of the symptoms of Celiac Disease. I've never weighed more then 145 lbs all my life. Now I am 122.

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

Celiac.com Sponsor (A8-M):


Jnkmnky Collaborator
Jnkmnky
Posted

It is a genetic autoimmune disease. You inherit the gene from a parent. Your family members should also be tested for the disease. How are you doing on the diet? Have you found gluten free foods to eat that are helping put the weight on?

Rachel--24 Collaborator
Rachel--24
Posted

Danceswithwolves,

I've only been *totally* gluten free for a little over a week now. My appetite is much better now that I'm not feeling sick all the time...and I've gained almost 10 lbs. already. Some of its fluid since I have malabsorption issues...so I know its not all muscle and fat I'm gaining but its *still* much more than I was able to gain with gluten in me.

Jen H Contributor
Jen H
Posted

Hey Danceswithwolves,

I don't think you're overanalyzing your situation. Last week I found out I have celiac disease and I have been wondering about some of the same questions. I had rheumatoid arthritis when I was younger, frequent ear and sinus infections, and had trouble putting weight on as a child. I also see symptoms in my family members. I think everything could be interconnected somehow, perhaps through celiac disease. Maybe I had it all along? So, in your case, it could very well all be related.

:) Jen

Guest DanceswithWolves
Guest DanceswithWolves
Posted
Danceswithwolves,

I've only been *totally* gluten free for a little over a week now. My appetite is much better now that I'm not feeling sick all the time...and I've gained almost 10 lbs. already. Some of its fluid since I have malabsorption issues...so I know its not all muscle and fat I'm gaining but its *still* much more than I was able to gain with gluten in me.

<{POST_SNAPBACK}>

Thank God is is somewhat reversible. I know that I may never be able to overindulge in my favorites again, but I don't want to be sickly looking all through my 40's either. God, I wish I would've realised what the hell celiac disease was and how to avoid it years ago. I guess the whole "stress from the new job" triggered it. It was bound to happen eventually.

I'm definitely done with beer and I guess if I want to enjoy a drink I will stick to wine (which I like anyway) or vodka drinks.

Yes...I have been constructing a gluten-free-free shop list and I did find that Kinniki( LOL ) bread available in a new store right near my home!!!!

Jnkmnky Collaborator
Jnkmnky
Posted

Consider yourself lucky, then. I can't find it in my Henry's, WholeFoods, Jimbos, Trader Joe's. At least, not consistently. SOMETIMES one of the stores will have it. I got sick of the disappointment, though, and have become a strict online orderer.

higgins Newbie
higgins
Posted

Save your receipts, too.

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

Celiac.com Sponsor (A8-M):


Guest DanceswithWolves
Guest DanceswithWolves
Posted
Save your receipts, too.

<{POST_SNAPBACK}>

So, you're telling me I can " write off " my Gluten? :D

celiac3270 Collaborator
celiac3270
Posted

Absolutely. If the total difference between your gluten-free food and the regular alternatives is at least 7.5% of your annual income, you can get a deduction for celiac. You have to save your receipts, though.

Read more here: https://www.celiac.com/st_main.html?p_catid...-27105204952.ca

tarnalberry Community Regular
tarnalberry
Posted
Absolutely.  If the total difference between your gluten-free food and the regular alternatives is at least 7.5% of your annual income, you can get a deduction for celiac.  You have to save your receipts, though.

<{POST_SNAPBACK}>

Minor modification - if your total medical expenses are greater than 7.5% of your income, you can add them to your itemized deductions. You can include the extra cost of foods needed to maintain a gluten free diet (the increase in price of a gluten free loaf of bread, or the whole cost of items unique to a gluten-free diet, like xanthum gum for baking) in your medical expense deduction.

So, if you make $50k a year, you would have to spend $3750 (out of pocket) in medical costs before you could take this deduction.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm  definitely done with beer and I guess if I want to enjoy a drink I will stick to wine (which I like anyway) or vodka drinks.

Yes...I have been constructing a gluten-free-free shop list and I did find that Kinniki( LOL ) bread  available in a new store right near my home!!!!

<{POST_SNAPBACK}>

Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

Rachel--24 Collaborator
Rachel--24
Posted
Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

<{POST_SNAPBACK}>

Does this also apply to something like vanilla extract? Is the alcohol in it grain based? All I know is I had a BAD reaction to the extract but also to vanilla flavored yogurt. I'm not sure if I'm just having a hard time with vanilla in general or if there is hidden gluten. I dont seem to react to things like gluten-free cookies which have vanilla listed as an ingredient. I'm so confused about that :blink:

zakismom Newbie
zakismom
Posted

Not all extracts are gluten free-try Mccormack,s. Also check your yogurt brand-not all are gluten-free.

Rachel--24 Collaborator
Rachel--24
Posted
Not all extracts are gluten free-try Mccormack,s.  Also check your yogurt brand-not all are gluten-free.

<{POST_SNAPBACK}>

Thanks...I called Spice Islands about the vanilla awhile back. I was told it was gluten-free but the woman was so quick to respond I sort of didn't believe her. Also the yogurt is on the Delphi list. I just bought Flavorganics Vanilla which is actually labeled gluten-free so I guess I'll have to try it and see if I react. I think its the only way I'll know for sure :(

PicturePerfect Explorer
PicturePerfect
Posted

How do you people know so much?

Merika Contributor
Merika
Posted

About the vanilla, it should be gluten-free if it's grain alcohol BUT you may react to alcohol or yeast, so you may be reacting to the vanilla :) Most people it seems who had celiac for a long time before going gluten-free have subsequent food allergies.

Merika

nogluten- Newbie
nogluten-
Posted

I've always had allergies and was very "hyper" as a kid, according to my family, but I was super shy to the point of social anxiety at school. I had ADD, always ate whatever I wanted and people thought I must be bulemic because I'm so thin. I experienced a lot of mood swings, depressions etc. I also had very chapped lips as a kid and carried around a Bonne bell lip smacker necklace all of the time. Half of my family has Celiac (French,American Indian,Swedish and Scots-Irish genealogy), but I'm the only one following the diet. Crazy, I know, but my Crohn's was more of a push for me maybe. My grandfather died of lymphoma and was finally diagnosed with Celiac shortly before his death. He had a lot of problems with drinking and the other things you mention throughtout his life, and auto-immune diseases run in my family. I know untreated Celiac can cause a lot of problems. I hope you've been tested, and good luck to you. If you are diagnosed with Celiac or you're not, a good book to read is "Restoring Your Digestive Health" by Jordan S. Rubin and Joseph Brasco. Sorry if this is poorly written or hard to understand but I'm tired! :blink:

Jen H Contributor
Jen H
Posted

And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

Okay, this is probably a dumb question, but I'm new to celiac disease. How can a soda fountain be contaminated?

:) Jen

DDShubert Newbie
DDShubert
Posted
Please go for potato vodka only. Many places say that grain alcohols and vinagers are okay for us. My families experiences scream differently. My son and I both react to them just as we would to a slice of bread, and the hangovers are awful. We switched to wines, potato vodka and gluten-free beer, Bards Tale is good if you can find it. Don't drink malt liqours, look for hard cider instead. And BEWARE the speedbar or soda fountain both are often contaminated. Use a canned gluten-free soda, not all are, or V8 or canned juice. Everyone is different but I would stay away from grain based anything to start.

<{POST_SNAPBACK}>

DDShubert Newbie
DDShubert
Posted

<{POST_SNAPBACK}>

HI,

I was just diagnosed with celiac disease. As an Irishman I am in mourning that I will no longer be able to have a Jameson and a Guiness. Are there any whiskeys or dark beers that you know of that I can still have?

Cheers,

Duane

Merika Contributor
Merika
Posted

Duane,

There are some special made gluten-free beers that are light at best. Nothing dark. I don't know what's available in Delaware. Maybe contact your local celiac org and find out. They will not be at your average grocery store.

Sorry, I'm not up on my whiskey ingredients. Someone else will have to chime in :)

Merika

nettiebeads Apprentice
nettiebeads
Posted
HI,

I was just diagnosed with celiac disease. As an Irishman I am in mourning that I will no longer be able to have a Jameson and a Guiness. Are there any whiskeys or dark beers that you know of that I can still have?

Cheers,

Duane

<{POST_SNAPBACK}>

Whiskey is a grain alcohol and supposedly any gluten gets filtered out in the distallation process. I know I haven't had a celiac disease reaction to whiskey, but for some dumb reason whiskey, even a little bit, gives me one hellacious hangover. I'm stuck with vodka and tequila.

zakismom Newbie
zakismom
Posted

I thought the better whiskeys were okay. Ihaven't tried any though, I'm happy with a margarita!

marfa62 Newbie
marfa62
Posted
Does this also apply to something like vanilla extract? Is the alcohol in it grain based? All I know is I had a BAD reaction to the extract but also to vanilla flavored yogurt. I'm not sure if I'm just having a hard time with vanilla in general or if there is hidden gluten. I dont seem to react to things like gluten-free cookies which have vanilla listed as an ingredient. I'm so confused about that  :blink:

<{POST_SNAPBACK}>

Can you explain to me how "Columbo" yogurt gets wheat in it? I do not understand , It is not on the label of ingredients. Dairies do not use flour as one of their ingredients. What am I missing in the manuyfactuing process? There is tons of sugar for sure in with the fruit. But gluten or wheat?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    2. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    3. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
    5. Scott Adams
      - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748
    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      Airborne Gluten?

      By Jmartes71 · Posted

      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.