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

New

lisamax

By lisamax
in Coping with Celiac Disease

 Share

Recommended Posts

lisamax Rookie
lisamax
Posted

Hi there I have just been diagnosed and i just wonder how I cope as it all sounds very confusing as to what I can and can't have.

Please help

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, lisamax!

It is a bit overwhelming at first but in time you will develop a sixth sense of what you should avoid. In the beginning there is a considerable learning curve. Sooner or later it becomes the new norm insofar as your dietary life goes.

Perhaps this will help you get off on the right foot:

Be most wary of eating out at restaurants and accepting dinner invitations from well-meaning family and friends who probably have no clue as to where and how gluten is found tucked away in the food supply. It's best when you do the inviting so you have control over the ingredients that go into dishes. One thing you will need to get a handle on and it's something that takes time and experience, is how sensitive you are to gluten. If you are not particularly sensitive you may not have to be quite as OCD about CC (cross contamination) as some do.

lisamax Rookie
lisamax
Posted
  • Author

Thank you for replying. You are right it's very overwhelming. I've been told to make sure I don't have gluten as my celiac disease is very bad. I'm sure in time with plenty of research I will get my head around it

 

trents Grand Master
trents
Posted
7 minutes ago, lisamax said:

Thank you for replying. You are right it's very overwhelming. I've been told to make sure I don't have gluten as my celiac disease is very bad. I'm sure in time with plenty of research I will get my head around it

 

What are your symptoms? What led to your diagnosis?

lisamax Rookie
lisamax
Posted
  • Author

Everything I ate I was having painful bloating plus going to the loo about 10 times a day, nausea too, excessive wind lol

trents Grand Master
trents
Posted

Once you've been gluten-free for a while and healing in the small bowel lining is well along, you likely will find those symptoms subsiding. It can take around two years for thorough healing of the SB lining but you should start feeling much better in a few weeks or at least 2-3 months if you are faithful in avoiding gluten.

lisamax Rookie
lisamax
Posted
  • Author

Thank u. I will definitely be avoiding gluten, it has taken 18 months of different tests until they finally thought of doing more bloods and camera tests. I've spent this time in so much pain and was hardly able to eat more than 6 mouthfuls of food before I bloated that bad. My husband is mostly going to go gluten free too as I can't cook due to my disability but I know to be careful of cross contamination.

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

You and your husband need to be aware that kissing can be a source of getting "glutened" if he is still consuming gluten. Something to think about at least immediately after he has eaten a gluten containing meal and traces of gluten containing food might still be in his saliva.

lisamax Rookie
lisamax
Posted
  • Author

Thanks. I really hadn't thought about this but thank you for bringing this to my attention 

Beverage Proficient
Beverage
Posted

Yes it's confusing and overwhelming and distressing. But it will get better as you learn. 

The best advice I was given was by the naturopathic doc that diagnosed me (after decades of mis-diagnosis from traditional docs)..."remember eyes, ears, nose, and throat all lead to the same place."  I'm extremely careful, no gluten in my kitchen, but accidents still happen. The times I have gotten accidentally glutened that drove me nuts to figuring it out was from inhaling (feeding chickens, glue in dust from home remodeling, flour in the air from family having made pies earlier, walking into a bakery, etc.).

Read through the articles in celiac.com (pull down menu at top), especially gluten-free Diet 101.

First concentrate on cleaning out your kitchen of obvious gluten food, and donating pans with non-stick, cast iron, wooden spoons, etc.

Clean stainless cookware really well before using now.  I made sure my dishwasher drain wasn't clogged with anything, and ran all my dishes and cookware through a cycle.

Look at any hair and body products, make sure all labeled gluten free.

Pets? Switch them to grain free, always switch pet food gradually, wash hands really well after petting them for now. Wash all their bedding.

Several people here are very knowledgeable about the typical and not-so-typical nutritional deficiencies connected to celiacs, they are very helpful.  Do a search on common vitamin deficiencies with Celiacs. It's usually not enough to just stop eating gluten and recover, your body needs some help. Get the best quality vitamins you can afford, look for capsules, not hard tablets (I've had much better luck with that anyway).  The forms of each vitamin can make a huge difference.  @KnittyKitty in here is tremendously knowledgeable about that. Many others too.

One step at a time.  Your world will soon be gluten free and you'll be feeling better.  

Ask questions here, lots of really knowledgeable and kind people here will help you.  

lisamax Rookie
lisamax
Posted
  • Author

Everyone has been really helpful, my mum keeps offering me biscuits lol, I keep telling her I can't but unfortunately she has alzheimer's so i will just have to keep telling her, bless her. I'm already on vitamins as I also have M.E, C.F.S, THINING BONES, RIGHT SIDE NEUROPATHY and BULGING DISCS IN MY SPINE X3, poor balance so with celiac disease on top of that I'm just trying to adjust.

I'm usually a positive person so I will win in the end I'm sure.

As people we just smile and get on with whatever life throws at us.

On a positive note I have a very extremely supportive husband.

Thanks for all advice and if u think of anything else I will be happy to hear it x

Elliemae7395 Apprentice
Elliemae7395
Posted

I went to my pcp  yesterday because of elevated blood pressure. I was feeling nauseated and had loose bm the day before. Still nauseated. Had a bit of fever. I've traced every mouthful I've had. No gluten. No new foods drinks or meds. Then I thought this could all be something else. Just a random stomach bug. But I read an article about sharing toasters with people who eat gluten. While my sister mostly follows my diet she has her own regular bread. It could be the toaster( which is now all hers) or as simple as her not wiping the cutting board. Anyway you have to be mindful of these little things. I realize I sound like a downer but I myself am trying to get a handle on this new life.

lisamax Rookie
lisamax
Posted
  • Author

I have my own toaster too. My husband is mostly gluten free but we try to be extra careful. I'm sure I will get to grips with it eventually. But the cost is crazy x. X 

Elliemae7395 Apprentice
Elliemae7395
Posted

Yes it is expensive. Especially when you have to accommodate 2 dietary issues. My partner was diagnosed with diabetes just after my diagnosis. He relies on me. But he does eat out several times a week. I do not. Too scared for sure. Luckily really only the different bread is an issue. The gluten free food is crazy expensive and prices vary from store to store. Supplies vary too. It can be scary sometimes

 

trents Grand Master
trents
Posted

The extra cost of eating gluten free can be minimized by focusing on simple, make it yourself fresh foods, such as fresh meat, veggies and fruit and eliminating the gluten free facsimile baked goods and confections as much as possible. It's the ready made gluten-free alternatives that drive the cost up.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,073
    • Most Online (within 30 mins)
      7,748
    amaryliss
    Newest Member
    amaryliss
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • Tazfromoz
      Shingles - Could It Be Related to Gluten/ Celiac

      By Tazfromoz · Posted

      My understanding, and ex I erience is that we coeliacs are likely to suffer more extreme reactions from viruses. Eg we are more likely to be hospitalised with influenza. So, sadly, your shingles may be worse because you are coeliac. So sorry you had to go through this. My mother endured shingles multiple times. She was undiagnosed with coeliac disease until she was 65. Me at 45. I've had the new long lasting vaccine. It knocked me around badly, but worth it to avoid shingles.
    • hjayne19
      Celiac Screening

      By hjayne19 · Posted

      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning?

      By yellowstone · Posted

      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      Celiac disease symptoms

      By Churro · Posted

      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Celiac disease symptoms

      By Wheatwacked · Posted

      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
×
×
  • 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.