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

Week One

OliviaB

By OliviaB
in Coping with Celiac Disease

Recommended Posts

OliviaB Newbie
OliviaB
Posted

It has almost been a week since I was diagnosed with Celiac and became gluten free. I have been managing pretty well so far. I had a very mild HD on my elbows which has almost cleared up, but I am still having GI symptoms. I suppose those will get better with time. It has been hard so far, but I think it will get better. My work had a party on day 3, and that was a tough day. The only thing I could eat were some gluten free chips my friend brought just for me. Lately, I feel like I have been eating to survive more than eating for the joy of food. Which is probably a good thing but sucks because I love food.

On a positive note: My friend at work (the one that brought me the chips) found a grocery store that gave her a list of all the gluten free foods in the store and where they are located. It is 3 pages long! That was kind of exciting! It will make my next trip to the grocery store much easier! My first time grocery shopping took me 3 and a half hours to read all the labels of everything I bought. I really owe my friend! I may have to cook her a gluten free meal in thanks.

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

As time goes on it does get better & easier...

When parties you know are coming up make foods safe for yourself & when you find a yummy dessert make it for all to enjoy... Works wonders!

Also have a safe bag of goodies in your desk, in your car, & a bar in your ourse at all times... I know many of my friends love to snack on chocolate, I'm not a big choc. fan so I take pretzels or another snack I enjoy...always ends up they eat my pretzels too... But I do't let them stick their gluten hands in the bag!!!!!!

Keep up the good work on your new gluten-free journey...

IrishHeart Veteran
IrishHeart
Posted

I hope that list I also gave you in your Newbie thread (which has now evolved into the "Newbie Info 101" permanent thread in the Coping Section)helped you with the grocery shopping, hon.

In time, this will become second nature to you.

Try to keep YOURSELF stocked with foods you can eat! (You cannot depend on others to provide gluten-free snacks, okay.)

At first, we do eat to survive, then we heal and we eat what we enjoy and it is not a "diet". It's just "natural".

It's a long journey, but well worth it to feel healthy. :)

Hang in there.

SugarBiscuit Newbie
SugarBiscuit
Posted

Good Luck! I am just finishing my first month of being gluten free.

The first week or two was rough for me. I had a lot more energy and no headaches, but I still had some GI symptoms. It was easy for me to feel discouraged that my symptoms did not magically vanish. I also kept thinking I had glutened myself in the first week, but my stomach was still healing.

Now that it has been a month, I can definitely tell you it will get better. I no longer crave wheat foods and I have started cooking a lost of fresh meals from scratch, which actually taste much better than the sandwiches I used to eat.

Like others have said, make sure that you are buying food just for YOU. I am used to cooking for my husband, so I often would just buy and prepare whatever he wanted. Now I buy my own separate groceries, cook my own meals, and keep my food in a different part of the kitchen, since I also live with my in-laws, who have no gluten issues.

Also, stock up on the snacks! I went from having no appetite to being ravishingly hungry every three hours or so. It's really nice that someone made you a list, I had such a hard time those first couple of trips to the store. I was definitely afraid of chemicals, so I mostly bought potatoes, rice, fruit, nuts, veggies, and dairy, which worked out well. Now I am adding in some gluten free pastas and some soda made with stevia, but for the most part I am chemical free.

I hope you feel better really soon!

GFinDC Veteran
GFinDC
Posted

It has almost been a week since I was diagnosed with Celiac and became gluten free. I have been managing pretty well so far. I had a very mild HD on my elbows which has almost cleared up, but I am still having GI symptoms. I suppose those will get better with time. It has been hard so far, but I think it will get better. My work had a party on day 3, and that was a tough day. The only thing I could eat were some gluten free chips my friend brought just for me. Lately, I feel like I have been eating to survive more than eating for the joy of food. Which is probably a good thing but sucks because I love food.

On a positive note: My friend at work (the one that brought me the chips) found a grocery store that gave her a list of all the gluten free foods in the store and where they are located. It is 3 pages long! That was kind of exciting! It will make my next trip to the grocery store much easier! My first time grocery shopping took me 3 and a half hours to read all the labels of everything I bought. I really owe my friend! I may have to cook her a gluten free meal in thanks.

Yep, reading labels is a pain. I prefer whole foods. They have labels like "chicken" or "green beans" or "peanuts". Nothing much else, except sometimes frozen things will have salt or water added.

Most groceries keep their gluten-free baked items in a freezer section, and many of them use a green tag for gluten-free in the USA. Some of them keep room temperature items in a gluten-free section also. Others spread the gluten-free food throughout the store. Some do both.

If you can stay away from the gluten-free pre-made processed items for the most part and do whole foods instead it's better. Those things are better as treats than every day food.

OliviaB Newbie
OliviaB
Posted
  • Author

So, I wrote my post in a hurry because I was about to leave for work. I just re-read it and realized how it sounded. I do eat plenty, mostly whole-foods just because I am scared of missing something on all the overwhelming labels, and I do always bring snacks with me (usually nuts and fruit). When I was talking about there being nothing for me to eat at the party besides the chips, I was strictly talking about food at the party. I had brought myself a separate lunch to eat along with some ice cream (normal and dairy/gluten-free) for the party. It was just depressing to see tables of cakes and pies and dips and such that I couldn't have.

And thank you IrishHeart, your list did help me my first time at the store!

Today I think I got glutened (not sure the correct terms yet, I'm learning, go easy on me!) for the first time. My husband had some beer today and I let him kiss me (once or twice ;) ) afterward. Honestly, I have been a little skeptical ( :unsure: ) of having symptoms from things like someone touching my food after touching bread or kissing me after eating gluten, but now I think I may understand. I have really felt like crap since then and had bad stomach cramps. I haven't felt this bad in a couple of days. Is this probably due to the kiss or just having not completely healed?

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. captaincrab55
      - captaincrab55 replied to sillyyak52's topic in Coping with Celiac Disease
      4

      Family education

      Welcome sillyyak52, I'm not sure of your age or if you live with your parents. Is there a nurse in your family or friend of the family that may be able to explain your diagnoses? You can get a second opinion by taking your lab results to another GI Doctor. Good Luck!
    2. trents
      - trents replied to SaiP's topic in Coping with Celiac Disease
      11

      Dangerously underweight, Perfect gluten free and insomnia

      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any...
    3. trents
      - trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      False blood test positive?

      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So...
    4. SaiP
      - SaiP replied to SaiP's topic in Coping with Celiac Disease
      11

      Dangerously underweight, Perfect gluten free and insomnia

      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    5. AndiOgris
      - AndiOgris posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      False blood test positive?

      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,171
    • Most Online (within 30 mins)
      7,748
    Melissa27
    Newest Member
    Melissa27
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • captaincrab55
      Family education

      By captaincrab55 · Posted

      Welcome sillyyak52,  I'm not sure of your age or if you live with your parents.  Is there a nurse in your family or friend of the family that may be able to explain your diagnoses?  You can get a second opinion by taking your lab results to another GI Doctor.   Good Luck!
    • trents
      Dangerously underweight, Perfect gluten free and insomnia

      By trents · Posted

      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      False blood test positive?

      By trents · Posted

      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Dangerously underweight, Perfect gluten free and insomnia

      By SaiP · Posted

      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      False blood test positive?

      By AndiOgris · Posted

      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
×
×
  • Create New...