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

So Confused

bknutson

By bknutson
in Coping with Celiac Disease

Recommended Posts

bknutson Apprentice
bknutson
Posted
:( I was diagnosed in june with a biopsy with celiac and it has been confusing every since. I have lost 60 lbs. which is fine with me because I needed to. But now I am losing my hair and I am afraid I will gain the weight back after going through pain to lose it, not knowing the reason. I am on a roller coaster from day to day of what to eat and not eat. I cant seem to get to my doctor because of my work schedule and the distance. I dont sleep well at night. But I dont feel sorry for myself at all. I feel blessed that it isnt a much worse thing. There are those who have something far worse. I know we all can deal with this just fine we just need to know how and to maybe help each other through it. I have looked and looked for this site so I could read all this stuff from others who have this and I just found it tonight. finially. Thankyou. I am 48 years old and I feel like I am 12 and lost. Please hang in there with me and be my friends.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cornbread Explorer
cornbread
Posted

Welcome to the site bk. :) Glad to hear you got a diagnosis - now the recovery can start and you can get on with feeling well. Please let me know if you've got any questions about diet, etc. Most of us on the board felt like you do in the beginning, it's a steep learning curve, but it gets really easy really fast, especially as you start to feel better.

How is the diet going? What are you confused about food-wise?

jrom987 Apprentice
jrom987
Posted

I can relate! I do not have any answers as I am newly diagnosed too but I wanted to let you know that I'll be your friend. I feel like a 12 year old too! :P I am 46 and I have been losing my hair too. Mine is probably due to the very low iron. Wish a few pounds would drop off but ...

Yes, we are blessed that we do not have anything worse but what we do have is still bad. The difference is that we can do something about it.

Email me any time. Good luck! I will be happy to share the things I have learned.

Jo Ann

bknutson Apprentice
bknutson
Posted
  • Author
Welcome to the site bk.  :)  Glad to hear you got a diagnosis - now the recovery can start and you can get on with feeling well.  Please let me know if you've got any questions about diet, etc.  Most of us on the board felt like you do in the beginning, it's a steep learning curve, but it gets really easy really fast, especially as you start to feel better.

How is the diet going?  What are you confused about food-wise?

<{POST_SNAPBACK}>

thanx for answering me. It is just that Gluten is in everything. I can not beleive it! And every time I read something that says I can buy this brand or that brand, like a stupid ninny, I just go buy it and dont read cause I dont have my glass's or something and firgure it said this brand. And then it kills me. So I have gone to wild oats a couple of times and that has helped. But is seems to be in one of my meds and I cant find it yet. It is so expensive to buy special stuff that I almost would just as soon not eat. And now I have found that tootsie rolls are ok and I have been really putting them down. Well that will be good for the figure. It is just a up and down emotional thing it seems. I just need to figure out all the hidden words on the ingrediants and get it together and I will be fine.

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

Bknut,

try this list for the meds.....

Open Original Shared Link

and

Open Original Shared Link

and

Open Original Shared Link

and

Open Original Shared Link

Kaiti USA has a list of companies that list wheat, barley and rye on theeir ingredients (and gluten).

celiac3270 has the delphi list.

Just ask these folks and they will likely help you out! :)

bknutson Apprentice
bknutson
Posted
  • Author
I can relate! I do not have any answers as I am newly diagnosed too but I wanted to let you know that I'll be your friend. I feel like a 12 year old too!  :P I am 46 and I have been losing my hair too. Mine is probably due to the very low iron. Wish a few pounds would drop off but ...

Yes, we are blessed that we do not have anything worse but what we do have is still bad. The difference is that we can do something about it.

Email me any time. Good luck! I will be happy to share the things I have learned.

Jo Ann

<{POST_SNAPBACK}>

thankyou so much man you girls are great.. I have been begging for people like you I just couldnt find you. My Dr.'s office gave me the paper with this web site on it and said there was chat room but I couldnt get on it I am not really good on the computer.

Do you still have alot of stomach pain. And the on and off bowell things. Bloating when you least expect it, burping, ect

bknutson Apprentice
bknutson
Posted
  • Author
Bknut,

try this list for the meds.....

Open Original Shared Link

and

Open Original Shared Link

and

Open Original Shared Link

and

Open Original Shared Link

Kaiti USA has a list of companies that list wheat, barley and rye on theeir ingredients (and gluten).

celiac3270 has the delphi list.

Just ask these folks and they will likely help you out! :)

<{POST_SNAPBACK}>

thankyou so much I will. man I cant beleive it , you are the best!!!!

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

Celiac.com Sponsor (A8-M):


cornbread Explorer
cornbread
Posted
It is so expensive to buy special stuff that I almost would just as soon not eat.

<{POST_SNAPBACK}>

You're right, the gluten-free replacement foods (ie: gluten-free versions of gluten foods) are expensive. What I do is mainly stick to naturally gluten-free stuff - fish, meat, eggs, veggies, fruit (not dairy for me but I used to have that too). Dark chocolate. Wine. Coffee. :) I will bake some gluten-free bread maybe once a month, but on the whole I eat natural whole foods. This has meant learning to cook a few things!... but really, I don't spend more than 20 mins making my meals, sometimes less. Cooking in olive oil / flax seed oil, I get lots of healthy fats, and with eating so few grains (ie: biggest source of carbs) I have lost weight. I didn't have much to lose either, but often times that's the hardest to lose! But I lose about 5lbs a week when I eat this way. That returns when I go through my gluten-free baking frenzy and have bread and cakes for a few days. Just a thought though, if you are having weight issues and finding the gluten-free diet confusing, this may be a fantastic route to take. I haven't been gluten contaminated by anything I made myself from fresh ingredients. And as a plus I have never felt this good in my life. My skin has cleared up, energy is through the roof, mood is eleveated/stable (no sugar rushes/crashes)...

Anyway, just an idea that is working for me. :)

nettiebeads Apprentice
nettiebeads
Posted

bk and jrom - how long were you sick before dx? bk - as you learn it will get easier. As someone stated earlier, the closer to natural the better the food is for you. And as your body continues to heal, the ups and downs will get less. I finally figured out I had been hurting myself because I was ignoring the word malt. It is definitely a four letter word for me now. I've cut out the cereal that had it and malt beverages, along with rice cakes from Quaker (there's been statements that their products are quite cross-contaminated) and my energy levels have soared. (walked the doggies two miles before work this a.m.)

Keep on trying and be sure to ask questions about anything. No question is too silly, especially when it concernes your health.

jenvan Collaborator
jenvan
Posted

glad you have come to this place--you are in good company. below i have posted some random info on gluten-free foods etc. go to the links to gluten-free food lists from the companies below... i'll mention too--don't forget to ck things other than food--your lipstick/makeup, lotions and soaps. we can help you find those products too. hang in there--you will get the hang of it in time!

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Thai Kitchen--lots of gluten-free thai type dishes...really good. You just add the meat you want, noodles, sauce etc are included. Open Original Shared Link

Amy's makes quite a few frozen dinners and a cheese pizza that are gluten-free. Amy's also makes quite a few gluten-free canned soups that are good too. You can see their products and get their gluten-free list here. Open Original Shared Link Amy's also makes some good gluten-free soups you can heat quickly.

Really yummy gluten-free rice dishes. You can serve as a side or add a meat/veggie and eat as a meal-- Open Original Shared Link

If you have a Trader Joe's by you-they have several gluten-free frozen stirfries and dinners. Just ck the gluten-free list on the website--east or west coast. They also have chicken sausage that is awesome!

Gluten free pantry makes some good skillet meals. Just add meat or beans. We really like the stroganoff meal. Open Original Shared Link free.com/glu/showprod.cfm...jectGroup_ID=74

Have you tried Tinkyada's gluten-free pasta yet? It is great and you can make a ton of quick meals with it.

Dinty Moore beef and chicken stew are gluten-free--just throw them in a pot to heat up.

jrom987 Apprentice
jrom987
Posted

bk and jrom - how long were you sick before dx?

Nettiebeads:

Wow! That is a good question! I know I have been sick for about 10 years, for sure. I moved to AZ three years ago, from CA. In CA, my two doctors had sent me for every test, to every specialist, and thought I had everything under the sun. I think they really thought I was a hypochondriac. I have been to the emergency room many times for severe non-stop stomach pains, throwing up, and diarrhea. They never found anything. They thought I was having a gallbladder attack or appendicitis. I went to a new doctor in AZ. He ran blood tests every few months and saw that my iron remained very low even though I was taking iron pills three times a day. He sent me to a hematologist who ran more blood tests and my antibodies came back very high. He in turn sent me for a biopsy, which came back with severe villi damage.

So, here I am! Two weeks into my gluten-free rebirth. :D

jrom987 Apprentice
jrom987
Posted

don't forget to ck things other than food--your lipstick/makeup, lotions and soaps. we can help you find those products too.

I just called Paul Mitchell yesterday and posted the info that was sent to me so you might want to read that post too. I am going to change my shampoo and other PM products. Wouldn't you know, the things are use all contain gluten? The lady I spoke to was extremely nice. She even said that if I have problems returning my full bottles to call her back! There are so many nice people in this world!

bknutson Apprentice
bknutson
Posted
  • Author

:D hey all you hero's out there... thankyou so much for your help. I have been bragging the last two days about you guys and this site. You gave me alot to think about and I am sure there will be tons more.You are all the best. Tell me some one.. If you do get ahold of some gluten how long befor you usually get sick. And do you ever find yourself wanting to eat everything you can find not because you are hungry but because you feel like you want something and you just cant satisfy whatever it is.I lost a ton of weight , about 55 or 60 lbs and I needed to so it is great, just a hard way to lose it but I dont want to gain it back. man it is a starnge sickness this one.

kevsmom Contributor
kevsmom
Posted
:(  I was diagnosed in june with a biopsy with celiac and it has been confusing every since. I have lost 60 lbs. which is fine with me because I needed to. But now I am losing my hair and I am afraid I will gain the weight back after going through pain to lose it, not knowing the reason. I am on a roller coaster from day to day of what to eat and not eat. I cant seem to get to my doctor because of my work schedule and the distance. I dont sleep well at night. But I dont feel sorry for myself at all. I feel blessed that it isnt a much worse thing. There are those who have something far worse. I know we all can deal with this just fine we just need to know how and to maybe help each other through it. I have looked and looked for this site so I could read all this stuff from others who have this and I just found it tonight. finially. Thankyou. I am 48 years old and I feel like I am 12 and lost. Please hang in there with me and be my friends.

<{POST_SNAPBACK}>

kevsmom Contributor
kevsmom
Posted

I began losing my hair due to medication I was taking. My doctor suggested that I take Zinc and Selenium (found in the vitamin aisle of the store) for this - and it helped.

Check with your doctor to see if it is ok for you to try. Make sure that the brand you get is gluten free. ;)

Archived

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

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


  • Member Statistics

    • Total Members
      131,854
    • Most Online (within 30 mins)
      7,748
    TDeb
    Newest Member
    TDeb
    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

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.