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

Newly Diagnosed And Confused

MikeM

By MikeM
in Coping with Celiac Disease

Recommended Posts

MikeM Newbie
MikeM
Posted

I just got diagnosed last week at 40 (small intestine biobsy, blood tests all positive). :o

My doc snail mailed me a pamphlet produced by CHEKMED Systems (Camp Hill, PA). As a newby I have been scouring this site prior to its arrival as I try to go gluten free. There are may discrepencies btween the "do not eat" foods listed in the pamphlet and on this site. While I do not have blind faith in Internet sites, I do believe they are more likely to contain current information.

The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few. This site contains recipes that not only contain these ingredients, but actually call for using some of them as direct substitutions. I bring up the vinegar because there is a news release on this site regarding distilled vinegar that leads me to believe it might be more up to date. Also, this site lists all distilled beverages (whisky, rye) as safe for gluten free consumption.

It's hard enough changing the basis of everything I eat (pizza and beer as staples ;) ), but to get conflicting information is making it even harder. :blink: Can anyone shed some light on the best place to get "the forbidden list" of ingredients?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Mike, and welcome to this board.

I have no idea who compiled your list, but it seems that somebody was very misinformed (and passing on this misinformation, via doctors, no less! :o ).

Buckwheat isn't even a grain, why would it be forbidden? And Amaranth, millet and quinoa are fine with a gluten-free diet as well. Wheat (all kinds, including spelt), rye, barley, triticale (a hybrid between wheat and rye) and oats are the ONLY forbidden grains on a gluten-free diet, as they are the only ones containing gluten.

I don't know about any alcohol, since I don't drink it anyway (I hate the taste).

Your best source for everything you need to start with is Nini. If you send her a PM, asking for the 'Newbie survival kit' (give her your e-mail address), she'll send you all the information you need to make it safely until you get the hang of the diet.

CarlaB Enthusiast
CarlaB
Posted

Distilled alcohol is supposed to be okay. Obviously, potato vodka, tequila and rum are not made from gluten containing grains, so are okay. The distillation process removes the gluten from grain alcohol, so all others should be okay as long as they don't add sour mash back in after distillation.

Both times I've tried distilled grain alcohols, I've had a reaction. However, both times I ate out in a restaurant, so it could have been the food.

Wine should be fine, too.

Welcome to the board ... I got diagnosed at 42, so I understand completely what you're going through!

tiffjake Enthusiast
tiffjake
Posted
I just got diagnosed last week at 40 (small intestine biobsy, blood tests all positive). :o

My doc snail mailed me a pamphlet produced by CHEKMED Systems (Camp Hill, PA). As a newby I have been scouring this site prior to its arrival as I try to go gluten free. There are may discrepencies btween the "do not eat" foods listed in the pamphlet and on this site. While I do not have blind faith in Internet sites, I do believe they are more likely to contain current information.

The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few. This site contains recipes that not only contain these ingredients, but actually call for using some of them as direct substitutions. I bring up the vinegar because there is a news release on this site regarding distilled vinegar that leads me to believe it might be more up to date. Also, this site lists all distilled beverages (whisky, rye) as safe for gluten free consumption.

It's hard enough changing the basis of everything I eat (pizza and beer as staples ;) ), but to get conflicting information is making it even harder. :blink: Can anyone shed some light on the best place to get "the forbidden list" of ingredients?

I agree with Ursula, but I just want to add that I read an article tonight about Millet, amaranth, quinoa, and other grains and how they are not gluten filled, but that they are simular, and may cause some people to get sick. BUT, I don't know of anyone who gets sick from these things. And I don't. And I eat things made from them. So perhaps the info you have was channeled through the same company/doctors as the article I read. They were looking at foods that contain gliadin, and drawing parallels, and talking about refractory sprue (the celiac disease that does not respond to a gluten free diet). Anyway, my whole point is that those grains are "in question" to some sources, but as far as I know to people on this site, those are ok. I only worry about wheat, oat, barley, malt, and rye. (ONLY? LOL).

And about buckwheat, the article said that it is OFTEN contaminated by wheat.

And I have gotten sick from Vinegar before, but I think that might have been a fluke. the more I learn, I am seeing that the distillation process SHOULD render it gluten free. It was vinegar in a condiment packet, so that packet might have been old or something, I have no idea. But as a rule, I do not avoid vinegar, and I do not get sick.

And alcohol.....I thought that vodka would be safe, therefore I could drink Smirnoff Ice. And I got soooo sick. Then I found out that Smirnoff Ice is a MALTED BEVERAGE and that is what made me sick! So plain vodka should be ok for you. (I haven't had the balls to try plain alcohol after that LONG NIGHT of sickness).

Ursa Major Collaborator
Ursa Major
Posted

Okay, I just googled chekmed, and the Jackson Gastroenterology site is their site. And here is some info I copied there from their diet information, which is directly opposed to what you say your pamphlet says.

* Do not eat anything that contains the following grains: wheat, rye, and barley.

* The following can be eaten in any amount: corn, potato, rice, soybeans, tapioca, arrowroot, carob, buckwheat, millet, amaranth and quinoa.

* Distilled white vinegar does not contain gluten.

* Malt vinegar does contain gluten.

Here is the link to the site: Open Original Shared Link

Which is very accurate information, indeed.

MikeM Newbie
MikeM
Posted
  • Author
Okay, I just googled chekmed, and the Jackson Gastroenterology site is their site. And here is some info I copied there from their diet information, which is directly opposed to what you say your pamphlet says.

Here is the link to the site: Open Original Shared Link

Which is very accurate information, indeed.

Thanks Ursula! I guess I should have taken my own advice and checked their web information before I took their paper version seriously. Guess the Internet isn't such a bad place to get info afterall.

You mentioned in your first post that I could get a "starter kit" from Nini. Who is she and how do I get ahold of her? Sorry to be so clueless, but this is all happening so fast I'm just trying to keep up (and not get depressed when I open the fridge).

Ursa Major Collaborator
Ursa Major
Posted

Mike, you click on the link in the bar on the top right corner of this page that shows how many messages you have (if any). That will bring you to your control panel. You click on 'compose new message' on the left. You put 'nini' (without the apostrophies) into the 'recipients name' window. Into the message title you put 'newbie survival kit', and into the message window whatever you want. ;) Don't forget to give her your e-mail address to send her kit to!

She'll reply to you soon I am sure. Her kit will be a life saver, I promise.

And until you get the hang of it, just eat stuff that is naturally gluten free! Any meat, vegetables, fruits, nuts etc. you don't even have to worry about. Do you have a health food store nearby? They have gluten free bread, cookies, pasta (tinkyada is the only one worth eating, don't bother with the rest) etc.

You'll be fine! I know it's hard at first, but it gets easier soon. And it will be worth it when you feel well again.

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

Celiac.com Sponsor (A8-M):


Rusty Newbie
Rusty
Posted

I'm with you Mike...I'm 40 and recently diagnosed. I've been on the diet for about 3 weeks and feel at least 10 years younger already.

I recently purchased the "Gluten-Free Resource Guide = Delaware Valley Edition" for my area from the National Foundation for Celiac Awareness (www.celiacawareness.org) thinking it would be a worthwhile purchase. I read it and found some good info but found conflicting information also within it's own pages. There is also a lot of conflicting information on the Internet. In particular,Carmel Color is said to be made from corn in the US but "can be made from barley malt" according to US regulations. Well that's a big help! :-) Same goes for artificial colors and flavorings as well as natural flavorings.

I've been having issues for the past 2 days again (first time since the diet started) and I'm not exactly sure what it is. Gets a little frustrating.

mommida Enthusiast
mommida
Posted

I suggest you keep a food journal. We have the vinegar / distilled vinegar question on this board at least once a week. Like the previous poster said distilled should be gluten free, but a lot of Celiacs seem to have some reactions from it. If it says malt vinegar you should avoid it. You need time to heal, and to figure out if YOU have any problems with it.

L.

mouse Enthusiast
mouse
Posted

Welcome to the forum Mike. I am glad that someone told you to email Nini for her survival kit. I had her mail it to me as I use it to help people that my doctor sends to me for guidance. It is a great tool. Some things that you should be concerned about, is if you get any bread, do not use your old toaster, but buy a new one. You did not say if you live alone. If someone else lives with you, then your personal toaster needs to be off limits. You need to check your toothpaste, shampoo, meds and anything that could or does go in your mouth. It does sound overwhelming at first but it is very doable. The longer you are gluten-free, the easier it gets. You also need to make sure that you do not dip your knife in jam, condiments, butter or anything that you previously used when you made sandwiches, etc. My husband has his own and I have my own. If it is something we share, then I put a sticker on it and he knows not to double dip. I know it is hard to believe, right now, but as you heal, the slightest amount of gluten (ie a crumb or two) will make you sick. Six months from now you will be a pro and glad you went gluten-free. Just think of the future and how well you well feel. Oh, we also believe on this forum that no question is stupid. So ask away about anything as we have heard it all - at least concerning Celiac or gluten intolerance. :blink:

gfp Enthusiast
gfp
Posted
The pamphlet's "Do Not Eat" list includes buckwheat, millet, amaranth, quinoa, distilled white vinegar, gin, whisky, and rye just to name a few.

Buckwheat: well its quite a heavy 'grain' even though its not really a grain but other than contamination is 100% gluten-free. However, as a starter and since you have damaged villi it might not be a bad thing to avoid until they are starting to heal.

Basically on grain distilled alcohol, many people do react, I do for one and again distilled alcohol is not good for someone with a messed up digestive system. The jury is still out on the grain spirits and I have yet to see anyone provide a full analysis of different alcoholic spirits from different sources that proves this, I have seen however many people say distillation "removes the gluten" but I have yet to see any proof it removes the breakdown products of gluten which are what causes the damage.

I rather think that in the absence of a clear and definitive analysis of vodka etc. the best advice is to give it a miss. There are all sorts of reasons for this, the gluten and its prducts are all alcohol soluble and who knows how this affects adsorbtion into the body?

Whisky and rye are one step further given they add something which is either the original mash or coloring flavorings which themselves may not be gluten-free.

dionnek Enthusiast
dionnek
Posted

Might I add - NO LICKING ENVELOPES! I am new to this too and have gone 3 1/2 weeks gluten-free, all for nothing I feel. Last night I forgot and licked an envelope - well, at least now I know what my glutening reactions are. Although, I have not started to feel any better being on this diet yet (I had extensive damage to my intestines so I assume they are not healed yet), but I did recognize symptoms about 3 hours after I licked that stupid envelope. Some people might start to feel better in a few days, while others (like myself I fear) might take many months before they feel any better. Don't give up.

Guhlia Rising Star
Guhlia
Posted

You guys might want to try Living Gluten Free for Dummies. It's a pretty good book for newbies.

Guest nini
Guest nini
Posted

I've sent you the Newbie Survival Kit, Mike... let me know if you have any more questions.

cheeka Newbie
cheeka
Posted
I've sent you the Newbie Survival Kit, Mike... let me know if you have any more questions.

Hi Nini,

I'd love the Newbie Survival Kit too! You can send it to michellewoollard@msn.com.

Thank you!!

Snaffleblue

Guest nini
Guest nini
Posted
Hi Nini,

I'd love the Newbie Survival Kit too! You can send it to michellewoollard@msn.com.

Thank you!!

Snaffleblue

I've sent it to you. I do not always see the posts on here asking me for the kit, so if anyone wants this PLEASE e-mail me at nisla@comcast.net and put "request newbie survival kit" in the subject line.

Archived

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

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


  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748
    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

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

      By trents · Posted

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

      By Jillian83 · Posted

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

      By cristiana · Posted

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