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 Celiac.com!
    eNewsletter
    Donate

Struggling...

murphy203

By murphy203
in Coping with Celiac Disease

Recommended Posts

murphy203 Rookie
murphy203
Posted

in my 4th week and seriously struggling. Today I had a salad with chicken when the other peeps in our meeting ordered PIZZA and from a place that offers gluten-free pizza with no gaurantees about preparations. It was tough to not: 1) order a gluten-free pizza and hope for the best 2) eat with the rest and test whether I will actually have symptoms (at 3.5 weeks gluten-free, I still havent tested my boundaries). Last night, husband and kids got chinese food from an unsafe source and left me in the lurch -- I was seriously mad, as we have a safe source that husband has tried ONCE and did not like. Grrr.... My oldest came home today with 2 different gluten-free cookies -- I know he meant well...

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

It'll get easier. I know that sounds hollow right now but it's true. I watch people eat "regular" food all the time and while it bothered me at first, now I see a skull and crossbones superimposed on anything with gluten. I wouldn't even be tempted.

 

So don't give in. One moment of pleasure isn't worth the damage to your health.

 

And remember, if you need to rant, we are here for you. We've all been through it and we all GOT through it. You will too.

 

(((((HUGS)))))

Link to comment
Share on other sites
nvsmom Community Regular
nvsmom
Posted

Yeah... it takes a few months to get really used to this way of eating.  And giving up convenience foods was really the hardest part.  

 

Smack your hubby on the head with a rolled up magazine for me.  That wasn't thoughtful... Opposite of thoughtful really.  LOL  I know it is (a bit) tough on the spouses to help us stay gluten-free but he's gotta know that last night he was either risking your health or risking your wrath! Not a safe choice for a husband either way.  My hubby compromised by eating out at lunches when he wants quick food.  If I'm there, it has to be safe... so chances are we eat in.   :rolleyes:

 

And don't test your boundaries.  Celiacs can't.  We don't all react with severe obvious symptoms but our health will be hurt by gluten.  I am that way.  I will feel poorly for a couple of weeks but it's nothing bad.  It is the arthritis and inflammation, and secondary AI diseases that get me.

 

Stay safe and hang in there.  It will be easier by the summer time.  :)

Link to comment
Share on other sites
fran641 Contributor
fran641
Posted

Murphy it is hard and anyone who says it isn't obviously doesn't have celiac disease. I hope some of these issues will get better and that you will stay gluten-free for your own health. It can be an isolating disease until the pieces fall into place. Unload here like bartfull said. We have been there and done that.

Link to comment
Share on other sites
icelandgirl Proficient
icelandgirl
Posted

Hi Murphy...

(((Hugs)))...it can be such a struggle, especially when you are starting out. I can imagine that it was difficult to eat your salad while watching everyone else eat pizza. I'm glad I was a stay at home home when I was diagnosed because the place I worked was always having food for something. Good for you to stick with a safe lunch. Keep doing that. You don't want to test those boundaries.

Your body needs lots more time to heal, but things will get easier in time. I no longer miss gluten foods...I do miss the convenience of being able to pick something up on a busy soccer/football night.

I'm sorry that your husband was insensitive too...that sounds hard. Does he understand how serious this is? Hopefully he's had a chance to read about and understand how important it is that you remain 100% gluten free for life. I know that my husband didn't know anything about celiac disease until I was diagnosed. We left the Dr's office that day and he went to work and did lots of reading. He got home that night and said, "I'm going gluten free with you. I don't want you to have to do this alone." He's my biggest supporter and always makes sure I'm safe. Hopefully you can help him see how important this is to you.

Keep coming back and asking questions and venting...We've all been there!

Link to comment
Share on other sites
Fenrir Community Regular
Fenrir
Posted

It took me about 6 months to get over it. Now, almost a year into it, I'm pretty well adjusted to it and it really doesn't bother me to have to eat my gluten free stuff when people are having pizza or other favorites from the old days. 

 

Of course, I've gotten a lot better a cooking as well, which helps.

Link to comment
Share on other sites
Jays911 Contributor
Jays911
Posted

Almost four months in, I can tell you it does get easier. I am blessed my wife, after reading "Wheatbelly", went gluten free as well. We cook a lot more of our lunches than we used to, but you find good gluten-free restaurants pretty quickly. It is just fast food on the road that I struggle with. Keep the faith.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


murphy203 Rookie
murphy203
  • Author
Posted

Thanks for the support, guys. I definitely have hit a rough patch, but today is a new day, and its the weekend to boot! Yesterday's salad was actually delicious, and I made a frozen Amy's pizza for myself for dinner -- it was pretty good! I ended up with stomach issues in the middle of the night again -- three times so far, each time after I had a gluten-free bread replacement, so something in there isn't working for me yet.

Link to comment
Share on other sites
badcasper Explorer
badcasper
Posted

and bake yourself a chocolate cake [king arther brands the best] betty crocker icing too and eat it in front of him and don't share! that's what I do at work when they order dounuts and pizza for everyone. I live alone but work is tough! Bless you!

Link to comment
Share on other sites
badcasper Explorer
badcasper
Posted

and if calories are an issue there are lots of delicious foods to replace cke.  my favorites are honeydew melon and canalope.

Link to comment
Share on other sites
Fenrir Community Regular
Fenrir
Posted

Namaste sells big bags of gluten free flour at Sam's Club or Costco pretty cheap (for gluten free stuff) and they have a really good recipe for brownies on their website. They are my go to baked sweets now days. 

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the support, guys. I definitely have hit a rough patch, but today is a new day, and its the weekend to boot! Yesterday's salad was actually delicious, and I made a frozen Amy's pizza for myself for dinner -- it was pretty good! I ended up with stomach issues in the middle of the night again -- three times so far, each time after I had a gluten-free bread replacement, so something in there isn't working for me yet.

Did you order that salad from a restaurant or bring it from home? Being woken in the middle of the night with an upset stomach can be a sign that we have been glutened. That said it can take some time to heal and trying to eat only food you prepare yourself can help speed the healing. 

Link to comment
Share on other sites
nvsmom Community Regular
nvsmom
Posted

Be careful with Amy's Pizza.  I think I remember reading somewhere that it is made in a facility that uses wheat.  I could be wrong - I don't buy Amy's.

Link to comment
Share on other sites
LauraTX Rising Star
LauraTX
Posted

Hopefully I can offer some advice on the husband part of this story.  It is going to take him longer to "get it" because he is not living it.  We went through the same thing like the chinese restaurant situation with In N out Burger.  It is in an area we go shopping at and on a Saturday night when all the sit down places have an hour long wait there is no way I am going to one and trusting the busy kitchen.  So I will ask to go to in and out.... when I first tried it I thought it was awesome, and the only place in that area I can get burger and fries.  Well, my husband didn't think it was all that great and would refuse to go.  Finally I talked him into it and when I told him "I know you think this place sucks, and if I could eat at one of those other good burger places I wouldn't want to eat here either.  But out of my choices, this is the only place where I can eat a burger and fries and feel close to normal."  That put it in perspective for him and now he offers to take me any time we are over there.

 

It is a struggle, but communicate with him what you are going through and feeling.  It will help him understand and eventually take a burden off you.

Link to comment
Share on other sites
murphy203 Rookie
murphy203
  • Author
Posted

lol, some good husband revenge recommendations above, which he probably would deserve if he wasnt so CLUELESS! And some good advice. Tonight I made italian meatballs with gluten-free breadcrumbs, gluten-free pasta, and nobody died -- imagine!!! Barilla gluten-free penne pasta seems to defy the laws of nature and actually tastes normal, especilly smothered in meatballs and sauce. And meatballs just dont care if the breadcrumbs are gluten-free.

I dont think I was glutened with the salad (but I know it was possible), its just that I have picked up a patten of sympoms when I have gluten-free bread products, maybe because of the xatham gum. I tossed the remain 2 Udi's hamburger rolls in the trash. I really like Amy's products in general, so having to abandon them is a little sad for me, but doable. I love to cook, I'll find a pizza recipe that works.

Link to comment
Share on other sites
murphy203 Rookie
murphy203
  • Author
Posted

OMG following up on the gluten-free dinner I made: my husband has had an EXTREME gastro reaction to the gluten-free food I made, symptoms like food poisoning. Five trips the the BR so far. The kids and I are fine. Anyboday experience something like this????

Link to comment
Share on other sites
LauraTX Rising Star
LauraTX
Posted

If you and the kids are fine and ate the same thing, it may be something else he ate or a bug he caught.   Some people can't do xanthan gum but we already know this is not in your meal, so unless he has a problem with a specific ingredient that you have yet to pinpoint, it may just be bad timing caused by something else.  Usually bad meals don't make you sick until a few hours later or the next day, depending on what is going in.

Link to comment
Share on other sites
  • 2 weeks later...
Mitchie K Rookie
Mitchie K
Posted

Thanks for the support, guys. I definitely have hit a rough patch, but today is a new day, and its the weekend to boot! Yesterday's salad was actually delicious, and I made a frozen Amy's pizza for myself for dinner -- it was pretty good! I ended up with stomach issues in the middle of the night again -- three times so far, each time after I had a gluten-free bread replacement, so something in there isn't working for me yet.

 

Hey there, I noticed that you ate an Amy's pizza and had some tum trouble? My throat closed up immediately after eating that brand, I looked on the back of the box, although it says gluten free it also says its processed in the same facility as wheat. Just a friendly warning for you, I can't eat Amy's pizza brand. 

Link to comment
Share on other sites
  • 3 weeks later...
Wheatless32 Newbie
Wheatless32
Posted

Yeah you have to looked very carefully for the made on shared equipment label, Amy's is no good.

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748
    TT24
    Newest Member
    TT24
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      This forum might be the last hope I have in my life. Please I beg you

      By knitty kitty · Posted

      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      This forum might be the last hope I have in my life. Please I beg you

      By BluegrassCeliac · Posted

      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...