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

Learning About It For The First Time


J-Man

Recommended Posts

J-Man Newbie

I never knew about this disease, and I want to learn as much as I can.

I just met a girl with Celiac, and I want to do whatever I can to make her happy.

Ultimately, I'd like to date her, but one thing at a time ;)

I got some gluten-free cookie mix, and I am going to make her up a batch of the cookies (carefully!)

I guess what I'd like to know is where I should start, as far as resources and information on what foods are safe and what foods aren't, and how we can move forward without any major foul-ups.

Who knows, I'd even consider going gluten-free (and anyone who knows me knows that'd be a big step!) because I think she's worth it.

Thanks in advance!

J


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Wow you are so sweet to do all that for her!

Ok well here are some things that may help:

Here is a link you can get lists of safe and forbidden foods and ingredients: https://www.celiac.com/st_main.html?p_catid=12

Here is a recent list of mainstream brands that will not hide anything even under questionable ingredients. These brands will list wheat,rye,barley,oats right on the label if they contain any. For other brands you do have to call and make sure if you see a questionable ingredient but with these you just have to check for one of those four things.

Aunt Nelly’s

Balance

Baskin Robbins

Ben&Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Dove

Edy’s

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman’s

Hershey

Hormel

Hungry Jack

Jiffy

Klondike

Knorr

Kozy Snack

Kraft

Libby’s

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely’s

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain’s

Frito Lay, ConAgra, and Utz also have many gluten free products however they can hide it so you have to check with each product but many are ok.

There is also a list which is 79 pages long with the gluten free status of many products, medications, foods, etc and that is very helpful.

There is also a restaurant list that is pretty nice to have for knowing what you can have at certain places.

These lists are easy to get if you want them.

When you make the cookies for her you have to make sure you use a clean bowl and clean utensils. Make sure you get any possible gluten off of it before you make them. If you use cookie sheets you may want to get a new one because knowing how alot of those sheets are that is a good way to get contamination.

Is she recently diagnosed or has she had it for a while? You should send her to this site. This site has great info and support.

PS: Forgot to add: there are many specialty gluten free products that taste really bad and it took me a while to find the good specialty items but there are great substitutes for stuff we can't have.

If you need suggestions on good brands of breads, pastas, and things like that then this is definitely the place to be too...alot of people on here know the good and bad brands

skoki-mom Explorer

Wow, you must really like this girl! She is so lucky that you are taking her condition seriously. My BF is very supportive as well and it means a lot to me.

Good tips from Katie above. As well, don't be afraid to ask her what she can have or not have, and if it's a not, just ask if there is a substitution you should get, or if you should just try something else. Likewise on restaraunts. I'd let her pick the places you go out to eat, just makes life a little easier.

Good luck to you both :)

J-Man Newbie
Wow, you must really like this girl!  She is so lucky that you are taking her condition seriously.  My BF is very supportive as well and it means a lot to me.

Good tips from Katie above.  As well, don't be afraid to ask her what she can have or not have, and if it's a not, just ask if there is a substitution you should get, or if you should just try something else.  Likewise on restaraunts.  I'd let her pick the places you go out to eat, just makes life a little easier. 

Good luck to you both :)

<{POST_SNAPBACK}>

Thank you so much for your responses. They have been VERY helpful!

As luck would have it, she may be going back to an ex. *pout* but I'll still learn all I can to be her friend at least.

I just never knew this existed!

J

Rachel--24 Collaborator

I'm pretty new to the diet myself...I'm also new to the kitchen so I cant help out too much there. Better to leave that to the more "experienced" people here.

Just wanted to say thats very sweet that you are showing interest in learning about Celiac for her. Even if she's just your friend I'm sure the gesture won't go unnoticed. :)

debmidge Rising Star

J-Man, Well sorry about that news....she doesn't know what she's missing in you. Obviously you are the best choice for her in that you care enough to keep her gluten free.

If it happens that she doesn't get back with ex & you happen to be the guy she wants, then keep in mind to take care of you going gluten free so that when ahem, smooching might happen, you won't transfer any gluten to her inadvertently.

My husband has celiac - we've been married 26 years, gluten free for last two, and the above was a topic of someone else's post on this board...so I had to learn it too.

Best wishes.

D

J-Man Newbie
J-Man,  Well sorry about that news....she doesn't know what she's missing in you.  Obviously you are the best choice for her in that you care enough to keep her gluten free.   

If it happens that she doesn't get back with ex  & you happen to be the guy she wants, then keep in mind to take care of you going gluten free so that when ahem, smooching might happen, you won't transfer any gluten to her inadvertently. 

My husband has celiac - we've been married 26 years, gluten free for last two, and the above was a topic of someone else's post on this board...so I had to learn it too. 

Best wishes. 

D

<{POST_SNAPBACK}>

Appreciated!

It's made me look at my own dietary intake as well, so it's really been beneficial.

J


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



Celiac.com Sponsor (A8-M):



J-Man Newbie
Rachel

Dx'd Graves Disease 1999

Radioactive Iodine for Graves 2003

Neg. Bloodwork 10/04

gluten-free since 4/11/05

Diagnosed by Enterolab 8/15/05

Positive IgA, tTg & malabsorption

HLA-DQ1, DQ3

I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

Sorry, that was rather long-winded... did it make sense?

J

KaitiUSA Enthusiast
I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

Sorry, that was rather long-winded... did it make sense?

J

<{POST_SNAPBACK}>

If the diet is ignored many other problems will arise. Most people who have other issues is because the celiac was undiagnosed for so long and other problems then started to arise.

If the diet is ignored you are 40-100 times more likely to get cancer, diabetes, osteoporosis and other life threatening and disabling things. It also knocks an average of 10 years off of your life if not followed. The stats go back to normal after you are gluten free.

J-Man Newbie
If the diet is ignored many other problems will arise. Most people who have other issues is because the celiac was undiagnosed for so long and other problems then started to arise.

If the diet is ignored you are 40-100 times more likely to get cancer, diabetes, osteoporosis and other life threatening and disabling things. It also knocks an average of 10 years off of your life if not followed. The stats go back to normal after you are gluten free.

<{POST_SNAPBACK}>

Since you're so helpful, I'll ask you the next big question...

Before you were diagnosed, what were the signs? Are there any "typical" signs that precede being diagnosed?

Jason

(and thank you.... I baked the cookies and I've been told it's her favorite mix *cheer!*)

Guest nini

Wow Jason, you sound like such a sweetie, and a good friend to this girl!!! Hope it turns into more for ya!!!

I've been gluten-free for 2 1/2 years now, and my daughter with me. My husband recently has gone gluten-free as well because he read the book Dangerous Grains and decided that gluten wasn't good for anyone! LOL! It makes it a lot easier on me in the kitchen that's for sure.

As Kaiti said, a lot of people go undiagnosed for so long that they end up having many other complications from it... this is one of those conditions that Dr.s previously were taught was rare, and so they are reluctant to even consider the possibility of this dx even when all signs point to it. Even too when the current studies indicate that this is wayyyyyyy more common than ever thought before.

I'm thrilled to see that you are here wanting to learn about this condition, I wish more people were like you!

Rachel--24 Collaborator
I couldn't help noticing, many of the members on this board seem to suffer from more than just Celiac... is it common for other ailments and disorders to join with Celiac, or is it more that Celiac was simply discovered as a result of the increased attention due to the other disease(s)?

<{POST_SNAPBACK}>

In my case I think I probably had the gluten sensitivity before I had thyroid disease. I've learned that Celiac or gluten sensitivity can be active long before symptoms appear. Like Kaiti said undiagnosed gluten sensitivity can lead to other problems. I cant really be certain of which came first but Thyroid and Celiac have a very strong link. I became aware of the thyroid problem 3 years before I really became sick with gluten symptoms. If the gluten sensitivity was there first I definately wasnt feeling it...I felt perfectly healthy.

Good luck with the girl and good job with the cookies! ;)

KaitiUSA Enthusiast
Since you're so helpful, I'll ask you the next big question...

Before you were diagnosed, what were the signs?  Are there any "typical" signs that precede being diagnosed?

Jason

(and thank you.... I baked the cookies and I've been told it's her favorite mix *cheer!*)

<{POST_SNAPBACK}>

There are over 200 symptoms with celiac and everyone differs as to which symptoms they get.

In fact, some people do not get symptoms at all so that makes getting a diagnosis worse.

They really need to do regular screening for celiac because it is very common...as many as 1 in 90 may have it in the US but only about 1 in 4900 I believe are actually diagnosed. So anyone can be walking around with it and not even know it or have been misdiagnosed.

J-Man Newbie
There are over 200 symptoms with celiac and everyone differs as to which symptoms they get.

In fact, some people do not get symptoms at all so that makes getting a diagnosis worse.

They really need to do regular screening for celiac because it is very common...as many as 1 in 90 may have it in the US but only about 1 in 4900 I believe are actually diagnosed. So anyone can be walking around with it and not even know it or have been misdiagnosed.

<{POST_SNAPBACK}>

Wow. Is it something you can just ask for? Is it something you "have" from birth or can it develop?

It seems so mysterious, I wonder if I have it??

Thank you :)

Jason

KaitiUSA Enthusiast

Well here is the full panel that should be run in check for celiac:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

You do not have to have it from birth...most people with celiac have a gene that predisposes them to celiac. This gene can activate at any point in life.

Not everyone with the gene develops it but they have that chance to.

Also, there has been debate over this but I believe it to be possible... even if you do not have a gene but have a problem with gluten then it can develop into celiac if you continue to eat gluten

J-Man Newbie

Do you think insurance would cover such tests? I wonder.

It seems like they should, it'd save them a lot of money in the long run.

J

Well here is the full panel that should be run in check for celiac:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

You do not have to have it from birth...most people with celiac have a gene that predisposes them to celiac. This gene can activate at any point in life.

Not everyone with the gene develops it but they have that chance to.

Also, there has been debate over this but I believe it to be possible... even if you do not have a gene but have a problem with gluten then it can develop into celiac if you continue to eat gluten

<{POST_SNAPBACK}>

dogear Rookie

J-Man, you sound really head over heels for this girl!!!!!!

The only thing, I've ever seen a man do for a woman at this stage that compares to this, was a guy who took a sign language class because he was really interested in a deaf woman!!!!

It would be sort of sad, if she just goes back to an ex and you never get a chance!!!

But take heart. Many reunifications if not most with an ex, are short lived. While I wouldn't recommend waiting for years and ignoring other women while you wait for her to get rid of the ex entirely, you can just be her friend. Don't denigrate the ex because it won't help your cause. But if you start taking the diet seriously now, she may remember that if and when she goes back to the dating game.

So don't let this possibility rule your life, but you may have a chance yet.

Boy, I feel like an advice columnist.

But if you do get a chance with this girl, remember that people with gluten-free diets have as many different "eating lifestyles" as other people. Some have nothng but meat and potatoes, some are vegetarians who live off fruit, vegetables, peanut butter, and yogurt. Some are conoseuirs of every thing at any corner of the globe that is gluten free. Some depends on the gluten free mixes, while others eschew them.

KaitiUSA Enthusiast
Do you think insurance would cover such tests?  I wonder.

It seems like they should, it'd save them a lot of money in the long run.

J

<{POST_SNAPBACK}>

I think it depends on which tests and which labs do it and also which insurance companies.

I had the celiac gene test as well as the full panel for celiac done by Prometheus Labs(one of the best ,if not the best ,labs for celiac testing) and I also had tests for other things run. We ended up having to pay quite a bit but the insurance company did help some too.

Canadian Karen Community Regular

Hi Jason!

Wow, this girl doesn't know what she's missing!! But from my 42 years of experience, I have learned that trying to "get back together" with an ex, rarely, if ever, works out, so don't take your hat out of the ring yet....... I'll give you a hint, just be there for her, show her the effort you are putting into learning about celiac disease, and be there for support for her. Unless she is blind, she will wake up and realize what is best for her......

In regards to your comment about insurance companies covering the cost of testing since it will save them money in the long run, you just hit the nail on the head. I hope they wake up soon and realize this........

What ethnic heritage do you have? There are certain ethnic groups that are at more risk for celiac than others.......

Karen

J-Man Newbie
Hi Jason!

Wow, this girl doesn't know what she's missing!!  But from my 42 years of experience, I have learned that trying to "get back together" with an ex, rarely, if ever, works out, so don't take your hat out of the ring yet.......  I'll give you a hint, just be there for her, show her the effort you are putting into learning about celiac disease, and be there for support for her.  Unless she is blind, she will wake up and realize what is best for her......

In regards to your comment about insurance companies covering the cost of testing since it will save them money in the long run, you just hit the nail on the head.  I hope they wake up soon and realize this........

What ethnic heritage do you have?  There are certain ethnic groups that are at more risk for celiac than others.......

Karen

<{POST_SNAPBACK}>

Well, I'm mostly Irish/Norwegian, with a few others sprinkled in there for good measure... I will ask my doctor about the tests and see what we can do to start, 'cause it can't hurt. I've seen too many people suffer due to ignorance, so I do try to learn what I can, even if it's bad news.

Thank you all for your words of encouragement. The cookies came out great, and I tried one that broke... and it wasn't half bad!

Our meeting today was disrupted because she got sick, and she thinks it's due to a potential gluten contamination thing from her evening.... but I'm meeting her at a "safe" restaurant tomorrow, cookies in hand ;-)

And yes, I'm being the friend that she needs. She's got the impression of my feelings, but I'm trying to keep them in check, since that's not going to help matters in the short term.

Again, thank you all, it's been most encouraging.

J

Canadian Karen Community Regular

Well, hate to break it to ya, but....., both of your backgrounds are in the high risk group for celiac disease.......

Just thought I would let you know........ :P

Karen

Guest nini

yup, Irish/Norweigan... high risk for Celiac...

I'm Irish/Scottish/English/French/Polynesian mix... tee hee...I'm a mutt! :P

J-Man Newbie
Well, hate to break it to ya, but....., both of your backgrounds are in the high risk group for celiac disease.......

Just thought I would let you know........ :P

Karen

<{POST_SNAPBACK}>

Where would I find this information so I can pass it around to my friends and loved ones?

J

Canadian Karen Community Regular

Well, here is one article, of many:

Open Original Shared Link

Karen

skoki-mom Explorer

Well you better be careful because you will have the single women with Celiac after you, lol!!!

I just wanted to chime in and say it is possible to have celiac disease and have no clinical symptoms. I got tested simply because my sister was diagnosed. I consider myself very lucky actually, because I had the full-on work up and I don't have any of the usual stuff. My blood tests are all normal (no anemia or thyroid issues etc), and my bone density is normal. I also never had any digestive symptoms. So, I'm lucky I can be proactive about it instead of trying to catch up. It's amazing to me really given my biopsy showed complete vilious atrophy, it really doesn't get any worse!!

Seems to me from what I've heard that an antibody test would be in order for most people with sort of "vague" symptoms of not feeling well, much less digestive symptoms!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,407
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    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

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “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.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “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?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “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.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “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?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “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?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “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 it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “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.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “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.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “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.” Better if it is gluten free, yes. “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.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “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.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...