Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Anyone Avoiding Alcohol While Their Intestines Heal?


GlutenFreeAl

Recommended Posts

GlutenFreeAl Contributor

I haven't been told by my doctor to avoid alcohol (although she also told me that most regular cereals were probably ok...), but I'm wondering if it's a good idea while my insides are getting better.

I was never ever a big drinker, but I could definitely drink more in college than I can now. Now, one drink and I'm either immediately asleep or doubled over in pain.

Could it be that we are absorbing too much alcohol?


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

I'm avoiding alcohol until I'm healed. Alcohol can be very irritating to the gut plus it makes me feel bad.

Guest cassidy

I haven't been drinking either. When I was eating gluten I constantly felt hungover, now I can't see why I would want to do that to myself when I am finally feeling better. It just isn't worth it to me and I'm sure my body appreciates it, and we don't have to worry about a designated driver anymore.

jenvan Collaborator

It absolutely makes sense that you notice more from alcohol than before healing or going gluten-free. I have never been a big drinker...but I can tell a difference and post gluten-free, actually feel the affects of alcohol, whereas previously, really did not. However, like I said, I would have at most 2ish drinks and that is every few weeks or months. I do think it is best to lay off the alcohol and give yourself time to heal, as alcohol itself will certainly not speed the process. As a side note, I have also noticed the same phenomenon with sugar--used to love candy, eat a fair amount of it. Now I have no desire for it, feels too sugary for me--go figure! :)

jerseyangel Proficient

I was never much of a drinker--but I do enjoy a glass (or 2) of wine now and then. I haven't had any since I went gluten-free. Probably when I get to the year mark, I'll try some and see how I feel.

nettiebeads Apprentice
I haven't been told by my doctor to avoid alcohol (although she also told me that most regular cereals were probably ok...), but I'm wondering if it's a good idea while my insides are getting better.

I was never ever a big drinker, but I could definitely drink more in college than I can now. Now, one drink and I'm either immediately asleep or doubled over in pain.

Could it be that we are absorbing too much alcohol?

Well, beer is definitely out, and also beer substitutes like coolers - they're made from malt and that comes from barley unless otherwise stated. I'm having a problem with what you said your dr said about most regular cereals probably being ok. Most regular cereals AREN'T ok. Most are made with malt for sweetening (barley again) and/or wheat starch. You must read ALL of the labels carefully.

And even though I've been gluten-free for a long time, I find that I cannot tolerate grain based alcohol, even though the gluten molecules are supposedly filtered out during the distillation. That leaves me my white wine (allergic to red and champagne), tequila, rum and potato vodka (if I could ever find it in this town)

Annette

AnneJ Newbie

I have been having problems with alcohol, I am at the one year mark. I felt beter for ahile, and now having some pain again. There is a new beer available in our area, tastes pretty good! I don't seem to feel well enough yet to take the chance on much of anything!


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



Celiac.com Sponsor (A8-M):



elonwy Enthusiast

This stuff is made in Idaho, maybe you can get a store near you to carry it

Open Original Shared Link

its yummy too.

I can't tolerate any grain based alcohol, distilled or not. Dunno if its connected, cause by all rights it shouldn't be, but I avoid them. maybe after a year or so I'll try some triple distilled whiskey (mmmm...whiskey) but until then its wine, tequila, run and potato vodka.

Oh yeah, and Ramapo Beer. I LIKE that stuff.

Elonwy

ebrbetty Rising Star

I still have a couple of glasses of wine..doesn't seem to bother me

WGibs Apprentice

I gave it up before I ever got sick. My BF joked when I got sick that maybe my body needed more tequila :lol:

Now I have a drink very occasionally and have suffered no ill effects...In fact, when I was on vacation and had a couple drinks that week, my GI stuff was better than ever. Maybe the BF is right... B)

mookie03 Contributor
It absolutely makes sense that you notice more from alcohol than before healing or going gluten-free. I have never been a big drinker...but I can tell a difference and post gluten-free, actually feel the affects of alcohol, whereas previously, really did not. However, like I said, I would have at most 2ish drinks and that is every few weeks or months. I do think it is best to lay off the alcohol and give yourself time to heal, as alcohol itself will certainly not speed the process. As a side note, I have also noticed the same phenomenon with sugar--used to love candy, eat a fair amount of it. Now I have no desire for it, feels too sugary for me--go figure! :)

Jen, i'm so glad you said this, i thought i was going crazy! I feel like im absorbing alcohol for the first time in my life- I was always a big drinker and had a tremendously high tolerance. Since going gluten-free, when i drink alcohol, i am buzzed almost immediately and drunk really quickly! I am really trying to avoid alcohol as much as possible, in fact i have no desire to drink at all, but its been really hard as bars comprise an enormous part of my social life living in NYC. I know thats lame, but its the lifestyle i have grown so adjusted to, and its hard enough to tell my friends ive eliminated 90% of my typical diet, but to then turn around and say im not drinking is a huge step. I do feel really great being gluten-free, and alcohol is such a setback. i really would like to cut it out of my life completely for at least the next 6 months to let myself heal completely (which wont be too hard as i have the bar exam coming up in july) :huh:

VegasCeliacBuckeye Collaborator

Nothing wrong with wine -- red or white -- depends on the season for me (Summer -- Sauvignon Blanc or a Pinot Noir, Winter -- Zinfandel, Pinot Noir or anything from Italy...)

Potato Vodka -- Chopin, Blue Ice, LLeuowosa

Tequila -- Ill Tassoro, Tres Generaciones, Patron (for shots) :)

Rum -- I am sick of rum -- I rarely order it now (except for the occasional Mojito)

The biggest change I underwent was being able to tolerate a "Hard Alcohol Buzz" versus a "Beer Buzz" versus a "Wine Buzz"

Wine and Booze feel worse in the morning, but they are a bit more lively and social as you are drinking -- maybe I should check into a program with thoughts like that....

darlindeb25 Collaborator

I have never been much of a drinker, but now, a little wine makes me so ill by morning that I dont drink anything, it's not worth it to me. Deb

teebs in WV Apprentice

Yes - I am avoiding alcohol (she types with very shaky hands!!! :blink: ) Before dx I drank at least a beer every night when I got home from work. As soon as my derm mentioned that he thought I had DH and I should avoid gluten (before biopsy dx) I quit drinking beer. I'm going to be honest - the beer is what I miss the most from my gluten-infested past! I switched to wine, but decided to quit it too since it seemed like it was making me itch. I have no idea if it was, but I thought I would start there.

Depending on how the Super Bowl goes, I may have a drink in my hand before the weekend is over (go Steelers!)

Felidae Enthusiast
Rum -- I am sick of rum -- I rarely order it now (except for the occasional Mojito)

The biggest change I underwent was being able to tolerate a "Hard Alcohol Buzz" versus a "Beer Buzz" versus a "Wine Buzz"

Wine and Booze feel worse in the morning, but they are a bit more lively and social as you are drinking -- maybe I should check into a program with thoughts like that....

I know how you feel about changing from beer to hard liquor. It really is different. It doesn't have the same effect. I'm with you all the way when it comes to Pinot Noirs. I didn't know I could have a Mojito.

CMCM Rising Star
I haven't been told by my doctor to avoid alcohol (although she also told me that most regular cereals were probably ok...), but I'm wondering if it's a good idea while my insides are getting better.

I was never ever a big drinker, but I could definitely drink more in college than I can now. Now, one drink and I'm either immediately asleep or doubled over in pain.

Could it be that we are absorbing too much alcohol?

I've never been able to drink beer or other "hard" alcohols...now I know why! I do drink small amounts of red wine several times a week, it it doesn't appear to bother me at all. :rolleyes:

mookie03 Contributor

while we are on the subject of alcohol, my friend just sent me this article (sorry if this has already been posted somewhere). My favorite parts are "celiacs are a thirsty and vocal lot" and "it does have a trace of a beer taste" :lol:

Beer that's gluten-free finds a sweet spot in marketThursday, February 02, 2006

By Bob Batz Jr., Pittsburgh Post-Gazette

Sweet news for people in the Pittsburgh area who can't drink beer because they can't tolerate gluten:

Ramapo Valley says its gluten-free beer "goes against the grain," because it isn't made with any.

Click photo for larger image.

A gluten-free beer is now available here.

Oh, and it's also kosher for Passover.

Passover Honey Beer is made by the Ramapo Valley Brewery of Hillburn, N.Y.

It contains no barley nor any grain. It's brewed with just honey, a "hint" of molasses, hops, kosher-certified yeast and water.

That makes it safely drinkable by people who have celiac disease, a condition in which gluten proteins -- found in wheat, barley, rye and other grains -- destroy the nutrient-absorbing lining in their small intestines, leading to other health problems.

Many would say that without some kind of malted grain, it's not really beer -- more like mead.

But Ramapo's co-founder, Egon Lizenberg, insists that Passover Honey is a beer -- "I haven't seen any wine with hops yet" -- and the federal labeling authorities apparently have agreed.

Mr. Lizenberg acknowledges, "It's hard for it to taste like the beer that you and I know because we've taken everything away from it. But it does have a trace of a beer taste."

And that's enough for celiacs across the country who have been clamoring for the brew and making it the brewery's best seller.

Gluten-free beer is hard to find. A sorghum-malt brew, Bard's Tale Dragon's Gold, was being contract-brewed in Buffalo for about two years and was very popular in places as near as Youngstown. But it never was available here and now is temporarily unavailable anywhere. "We have some pretty unhappy customers," says George Fisher of Cavalier Distributing in Blue Ash, Ohio, who's telling them he expects it back in March.

A few gluten-free beers are commercially available in Europe, Australia and Canada, but not yet in the United States. Milwaukee's Lakefront Brewery just this fall started making a version, New Grist, that's also selling like gluten-free hot cakes. It's carried by some stores in Ohio -- see www.lakefrontbrewery.com -- where some Pennsylvanians have been driving to get it. Brewery co-owner Russ Klisch says the brewery is talking with Pennsylvania distributors now.

Lakefront has found out, as did Ramapo Valley, that celiacs are a thirsty and vocal lot.

"The celiac community demands their products," says Mr. Lizenberg, whose Passover Honey Beer started as a novelty that he says tasted "horrible."

Celiacs seized on it, though, and soon, he was taking kegs of improved versions to celiac gatherings around the country. He now sells it in several states and is having a hard time keeping up with demand. The brewery is soon is to start offering a gluten-free raspberry beer ( www.ramapovalleybrew-ery.com).

Bringing Ramapo's gluten-free brew into this region is the South Side's Frank B. Fuhrer Wholesale Co., which began delivering it to area outlets Tuesday. General manager Ed Haubrick says a case retails in the high $30 range. One outlet that's just started selling six-packs ($13.49) and singles ($3) is 3 Sons Dogs & Suds in Pine. Owner Bill Sukitch says he's already had many inquiries.

One came from Linda Weissert of McCandless. The U.S. Steel secretary found out about a year ago that she can't tolerate gluten. She's not a big beer drinker but was nonetheless excited to learn, from a colleague who is an officer in the Greater Pittsburgh Celiac Sprue Support Group, that the gluten-free beer is available. "I use it so much in cooking. It's killing me to make chili without a bottle of beer in it," as well as other recipes such as beer batters and fondues.

She and her husband picked up a six-pack at 3 Sons Tuesday night, the first night it was to be available, and she liked it. "The initial taste tasted just like beer, and then it's very sweet." She planned to use it last night to cook beer steak.

Other celiacs can ask their local distributor or other outlet to carry the brew.

Mrs. Weissert notes that one in 133 people is affected by the condition, a figure used by the Celiac Disease Foundation. Last year, the National Institutes of Health estimated it at up to one in 100, roughly 3 million Americans.

Many have different or no symptoms, so this autoimmune disease is difficult to diagnose. Untreated, it can leave the intestines unable to absorb nutrients. Problems range from diarrhea and fatigue to anemia, osteoporosis and other conditions.

Most celiacs are fine if they vigilantly avoid anything containing even minute amounts of gluten, which -- even with the new 2006 rules requiring labels to note if a food contains wheat and seven other potential allergens -- is no easy task.

"Now the only thing we need," Mrs. Weissert says with a laugh, "is a pizza place in town that makes real, honest-to-God pizza" -- with celiac-safe crust.

jkmunchkin Rising Star

When I was a teenager and through my early 20's I was a big drinker. But over the last few years I had virtually stopped because I just felt so awful the next day. Now I know why since I mostly drank beer or vodka's that had gluten in them. For the first 4 months or so after being diagnosed I didn't drink at all. But the last couple of months I've started to have a few drinks when we go out without any problem. No more feeling awful the next day.

Clark Bent as Stupor-Man Contributor
When I was a teenager and through my early 20's I was a big drinker. But over the last few years I had virtually stopped because I just felt so awful the next day. Now I know why since I mostly drank beer or vodka's that had gluten in them. For the first 4 months or so after being diagnosed I didn't drink at all. But the last couple of months I've started to have a few drinks when we go out without any problem. No more feeling awful the next day.

I'm pretty much identical to this except I'm in my first month of the gluten-free diet. I didn't have any problems (except for the typical hangovers) while drinking in high school and for most of college. And I drank a lot in college (there's a reason why Lehigh was the number 1 college in beer for years). Somewhere around the time I started dating my ex-girlfriend (maybe she caused the onset of my headaches ;) ), I cut down on drinking, and within a year if not sooner, I started reacting to alcohol differently. In the past 3 years since then, I've reacted negatively nearly everytime I drank even a single beer.

I'm avoiding alcohol for the time being on my elimination diet, but I'm gonna pick up a six pack of gluten free beer this weekend to have in reserve. They sell it at the whole foods by me, and I was told that it sells out fast and to call ahead (damn, alcoholic celiacs B) )

  • 4 months later...
reneemc Newbie
I know how you feel about changing from beer to hard liquor. It really is different. It doesn't have the same effect. I'm with you all the way when it comes to Pinot Noirs. I didn't know I could have a Mojito.

hey, just curious... so rum and tequila are ok...jose quervo tequila and bacardi rum ??? I am going on a short trip over the 4th of July holiday and there will be a bit of drinking around esp. the 3rd and 4th of July?? Back home on the 5th. I KNOW BEER bloates me terribly and then am sick with diahreah the next day and so sick for at least two days.. But some of the people I know, think I', just being prissy, when I say that I can't drink beer.. Please advise on the rum and Jose

gfp Enthusiast
Well, beer is definitely out, and also beer substitutes like coolers - they're made from malt and that comes from barley unless otherwise stated. I'm having a problem with what you said your dr said about most regular cereals probably being ok. Most regular cereals AREN'T ok. Most are made with malt for sweetening (barley again) and/or wheat starch. You must read ALL of the labels carefully.

And even though I've been gluten-free for a long time, I find that I cannot tolerate grain based alcohol, even though the gluten molecules are supposedly filtered out during the distillation. That leaves me my white wine (allergic to red and champagne), tequila, rum and potato vodka (if I could ever find it in this town)

Annette

I also react to grain based alcohol ... I have posted my theories here but if people care to beleive or not is up to them, I realise the wieght of medical opinion is that they are OK ... however I and others than Annette also react.

However on alcohol in general its certainly an irritant and not the best but unlike Annette Im OK with good red wine. Annette I find it improbable you are 'allergic' to champagne, I can't drink it either but chemically it is the same as normal white wine but with more CO2 and acidic. Now the fermentation of wine is a very complex matter and the second fermentation of the lacto-mallic components is different in every bottle so its not impossible but I would guess its actually just the acidity. If I drink champagne its a recipe for stomach acid and reflux .... but that's not the same as a allergic reaction. However it is possible that the yeast is a problem OR the yeast itself is cultured on grain...

Having said all that I can't stomach cheap wines at all and stick to decent wine.

An interesting point is many good end old-world wines do not add yeast at all. They have been making wine so long that the yeast is predominant in the walls and earth. If you want to risk one then I would say a clos des mouche or aloxe corton (both also low in tannin) might be worth a try.

Strangely Pepes the diarist drank clos des mouches every morning as was a custom then. I wonder if he reacted badly to the heavier high tannin wines?

  • 3 months later...
Stagiary Newbie

Alcohol hits me a lot harder than it did before I went gluten free in May 2006. I feel the effects of alcohol faster, and I feel bad after one drink, though neither glutened nor hungover, for about a day. On Friday night, merely sharing a room with beer drinkers was enough to make me feel queasy and tired. Maybe that's psychological.

I have my first appointment with a gastroenterologist next week, and I plan to ask her about it then. Indeed, I waited four long months for this appointment. It better be good.

I really miss vodka martinis, cosmos, and red wine. I am afraid to return to Belvedere (from rye) or Grey Goose (from wheat). I can't find a potato vodka that doesn't end up tasting like cough syrup. I'm excited about Ciroc, a French vodka made from grapes. I had one really good dirty martini made from Ciroc before I decided to forego alcohol pending celiac healing.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,298
    • Most Online (within 30 mins)
      7,748

    Renee D Behning
    Newest Member
    Renee D Behning
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
×
×
  • Create New...