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

Overwhelmed


Gia

Recommended Posts

Gia Newbie

I will start of by say sorry for spelling issues. I was told of my celiac last year. They told me I was allgeric to wheat and glucan and to stay awayfrom it gave me a book asked me to change my diet and well that was it. Me being the know it all I am thinking well try to stay away from wheat bread ect... Did not relized it was A autoamumun disease or how severe it really was thinking my bad allergies I already had, was thinking thats all I had to do. I was watching TV the other day is when I relized on Dr Oz how bad it was.

I have been in my room angry, depressed out of my mind, bad mood, really not a pleasant person to be around barely stand myself as company for almost 2 months with no energy and thought of suicide because of how horriable I have been feeling. the pain physcially and emotionally is so severe I can't even explain it. I ache everywhere, I hardly ever sleep, my stomach cramps r so bad feels like there is an alien about to burst out, ear aches, migraines and now in the last 2 weeks a rash from hell that itches burns and painful.........Oh did I mention maybe u all should call a wambulance......lol.

Whinning has never been something I have done or usually do, but boy have I made up for it in the last few years, feeling sorry for myself never was big on either, now I am a big fan...... motivation what in the world is that.....mine is on layaway and can't get it out. And to whine more on top of all that I also have COPD and empazemia...... r u done reading yet....lmao

So my world has opened up to a new begining and a new lease on life and a bit happier hahaha the food is expensive, I am on disability and live with my best friend who god help her these days for hanging in there with me.

I don't know where to start or what to do, all I do know is I need help and need to feel better soon and well it would be a awesome thing if this rash would go away....lol.

with regards whiney

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



VioletBlue Contributor

Well, I can say from my personal experience that most of the physical problems that you have I also had. They all went alway when I stopped eating gluten and uncovered a few other food allergies. Even the COPD.

I can't say it was easy. I can't say it will be easy for you. It takes while to get the hang of all the things gluten is in and weed them out of the pantry and frig. But the trade off would be feeling better than you have felt in a long time.

And if I can do it ANYONE can do it :D

I will start of by say sorry for spelling issues. I was told of my celiac last year. They told me I was allgeric to wheat and glucan and to stay awayfrom it gave me a book asked me to change my diet and well that was it. Me being the know it all I am thinking well try to stay away from wheat bread ect... Did not relized it was A autoamumun disease or how severe it really was thinking my bad allergies I already had, was thinking thats all I had to do. I was watching TV the other day is when I relized on Dr Oz how bad it was.

I have been in my room angry, depressed out of my mind, bad mood, really not a pleasant person to be around barely stand myself as company for almost 2 months with no energy and thought of suicide because of how horriable I have been feeling. the pain physcially and emotionally is so severe I can't even explain it. I ache everywhere, I hardly ever sleep, my stomach cramps r so bad feels like there is an alien about to burst out, ear aches, migraines and now in the last 2 weeks a rash from hell that itches burns and painful.........Oh did I mention maybe u all should call a wambulance......lol.

Whinning has never been something I have done or usually do, but boy have I made up for it in the last few years, feeling sorry for myself never was big on either, now I am a big fan...... motivation what in the world is that.....mine is on layaway and can't get it out. And to whine more on top of all that I also have COPD and empazemia...... r u done reading yet....lmao

So my world has opened up to a new begining and a new lease on life and a bit happier hahaha the food is expensive, I am on disability and live with my best friend who god help her these days for hanging in there with me.

I don't know where to start or what to do, all I do know is I need help and need to feel better soon and well it would be a awesome thing if this rash would go away....lol.

with regards whiney

Link to comment
Share on other sites
Skylark Collaborator

Wambulance on its way! (kidding) :P

You sound like you have a million different celiac symptoms. The demotivation and depression comes with the disease. It has mental as well as physical effects. That awful itchy rash could very well be dermatitis herpetiformis, the celiac rash.

Getting gluten-free for real may fix a lot of this. And by the way, gluten-free is only expensive if you buy the overpriced breads and whatnot. Rice and potatoes are cheap! You can pretty much live on rice, potatoes, tortillas, beans, and whatever fruit and veggies you can afford. Cook your own meats and they will be gluten-free as well. Get the expensive gluten-free stuff as an occasional treat if cash is an issue, not a staple.

Go off dairy for now too. It will probably help with all the symptoms. You can try reintroducing it later to see whether or not you're sensitive.

Glad to hear you have a best friend helping you out, and do come here to whine when you need it! That's why the board is here!

Link to comment
Share on other sites
SGWhiskers Collaborator

You've gotten good advice from these two. Not everything will get better on a strict gluten free diet, but you are likely to see major improvements over time in your overall health. When I was first diagnosed, I didn't understand/believe how strict I needed to be (or how long it would take). Cross contamination cost me 3 months of continuing to feel crummy. So when the folks here say you have to be strict, listen. They know what they are talking about. I'm so glad you found this website. It is an amazing resource!

If I were on a fixed budget, I would buy a cheap 12 inch frying pan with 2 inch deep sides for cooking everything in. I would buy a new can opener, a heat resistant spoon/spatula, and a new plastic cutting board. Oh, and aluminum foil for covering your food or pans if you need to cook on something that is contaminated. The rest is just for convenience and the money may be better spent on rent or a chicken to roast.

Best wishes for an easy transition.

Link to comment
Share on other sites
sb2178 Enthusiast

Yeah, I've been using foil over cookies sheets and it's easy. Eventually they will get replaced, but it's going to be a slow process for the baking equipment and supplies.

And sweet potatoes; they are excellent. Make a trip to an Asian market and get some cellophane or rice noodles for occasional treats (homemade chicken noodle soup). If you can get the Caribbean root vegetables and know how to cook them (you can even just boil and eat plain like potatoes) they are often even cheaper than potatoes (in cities, at "ethnic" grocery stores).

Anything that is stainless steel can just be scrubbed well. A cheap rice cooker might be worth the investment if you're going to eat a lot of rice. It's on my list, and I saw one at a CVS for less than $20 so it might be bought sooner rather than later.

Weirdly enough, stick to it and the pain goes away. Amazing once you get there.

Link to comment
Share on other sites
Marilyn R Community Regular

I've been to the dark side and think I'm finally on my way out. It took me awhile to figure out that soy is another protein my body attacks.

Follow the great advice from above, stick with whole foods prepared at home and/or labeled canned foods that you've read every ingredient ... and bleach or replace your silverware holder/drawer. You'd be amazed at the crumbs in your silverware holder, especially if you haven't exactly been up to cleaning for the past 18 months.

Good luck! There are still so many really good things to eat and you won't have to call the wambulence.

Link to comment
Share on other sites
sandsurfgirl Collaborator

Chalk another sad story up to stupid doctors. They should have explained to you how serious this is you poor thing. Yes with allergies sometimes you can build a tolerance and eat small bits of the allergen if it's not life threatening. Not so with celiac. There is no amount of gluten that you can eat.

The good news is that it WILL get better when you are completely gluten free. Eat simple healthy foods. Don't go crazy on the expensive gluten free stuff. It's not good for you anyway. Your damaged intestines need good raw materials to heal.

Eat eggs, meats, fruits, veggies, rice, rice pasta (love Tinkyada brand), stuff like that. Whole natural foods are best.

For bread, I use a mix that I buy online that's not so expensive and tastes really similar to Udi's. Better in my opinion. It's Gluten Free Pantry Basic White bread mix and it's super easy to make. It's about $4 a box and makes a really big loaf.

IMPORTANT: Use the search function on here and learn about withdrawals. Because you were so sick it may take awhile and your body might do some wacky wonky things before you get entirely better.

ALSO- read some threads about shampoo and beauty products. Some say it doesn't matter but many many of us, me included, have gotten glutened by shampoo with wheat running down our faces in the shower or lotions getting on our hands. Suave has some good options that don't have gluten. Usually the gluten in beauty stuff is in the form of wheat like wheat germ oil, wheat extract, etc.

Hang in there and honor your grief process. it's okay to whine and feel sad. We've all been there and we get there sometimes when things get rough. It's a loss and you have to process the emotions.

BIG HUGS for you!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



sandsurfgirl Collaborator

I've been to the dark side and think I'm finally on my way out. It took me awhile to figure out that soy is another protein my body attacks.

Follow the great advice from above, stick with whole foods prepared at home and/or labeled canned foods that you've read every ingredient ... and bleach or replace your silverware holder/drawer. You'd be amazed at the crumbs in your silverware holder, especially if you haven't exactly been up to cleaning for the past 18 months.

Good luck! There are still so many really good things to eat and you won't have to call the wambulence.

Ha ha! I've been to the dark side too. Ugly nasty place.

Soy kills me! I was drinking soymilk daily before diagnosis since I couldn't digest dairy. Constant sinus infections. I cut soy and tried it again. My nose swelled up inside and my sinuses were terrible. And the pain in my gut was unbearable. Soy is evil for me.

Link to comment
Share on other sites
loco-ladi Contributor

I also did not have the best of information when i started this diet... but a couple years later when i "started over" i did much better...

this is a very good forum and you will do well here and get lots of help...

my advice is.... how detailed you get into dishes etc is a personal thing and

TAKE BABY STEPS! dont try to figure out everything all at once!

I have 2 simple recipes to hand over to you...

#1 chicken breast broiled or baked with simply salt, pepper and Apricot marmalade

#2 pork (i use loin but chops is good also) salt, pepper and believe it or not nutmeg (fresh ground is best but pre-ground also would work)

Link to comment
Share on other sites
K-Dawg Explorer

Hey Gia:

You've gotten some really great advice from the above posters. This forum is really great. I will just reiterate that you need to hang in there... since you live with a roomie, be careful of cross contamination in the kitchen. Those great sweet potatoes won't do you any good if you cook them in the same pot that your roomie cooked her pasta in. Be careful. Stainless steel pots will clean well, assuming you clean them properly. But it is sometimes hard to get the pasta grunge out. Also, never use her wooden utensils. You'll never get the gluten residue out of wood and that includes a butcher's block.

Hang in there. I like the book by Shelley Case, should you want a good one.

KDawg

I will start of by say sorry for spelling issues. I was told of my celiac last year. They told me I was allgeric to wheat and glucan and to stay awayfrom it gave me a book asked me to change my diet and well that was it. Me being the know it all I am thinking well try to stay away from wheat bread ect... Did not relized it was A autoamumun disease or how severe it really was thinking my bad allergies I already had, was thinking thats all I had to do. I was watching TV the other day is when I relized on Dr Oz how bad it was.

I have been in my room angry, depressed out of my mind, bad mood, really not a pleasant person to be around barely stand myself as company for almost 2 months with no energy and thought of suicide because of how horriable I have been feeling. the pain physcially and emotionally is so severe I can't even explain it. I ache everywhere, I hardly ever sleep, my stomach cramps r so bad feels like there is an alien about to burst out, ear aches, migraines and now in the last 2 weeks a rash from hell that itches burns and painful.........Oh did I mention maybe u all should call a wambulance......lol.

Whinning has never been something I have done or usually do, but boy have I made up for it in the last few years, feeling sorry for myself never was big on either, now I am a big fan...... motivation what in the world is that.....mine is on layaway and can't get it out. And to whine more on top of all that I also have COPD and empazemia...... r u done reading yet....lmao

So my world has opened up to a new begining and a new lease on life and a bit happier hahaha the food is expensive, I am on disability and live with my best friend who god help her these days for hanging in there with me.

I don't know where to start or what to do, all I do know is I need help and need to feel better soon and well it would be a awesome thing if this rash would go away....lol.

with regards whiney

Link to comment
Share on other sites
sandsurfgirl Collaborator

Lawry's season salt and McCormick lemon pepper together are so good on meats. People rave about my steak and my pork chops when I use those.

I put olive oil, salt and the lemon pepper on veggies before I grill them and they come out so good!

It gets easier. I promise!

One thing that helps me a ton is I don't try to make meals for every meal. I eat foods. So for lunch I might have some sort of meat or protein like a hard boiled egg, a few pieces of fruit, some cut up carrots and a handful of gluten free crackers. Glutino are so good although scary overpriced. Or I eat corn tortilla chips.

Or I eat a salad for lunch with some sort of meat either on top or on the side and then put oil and vinegar on it.

Even dinner is often a meat, a veggie and a starch like rice or potatoes, or maybe some baked Kettle chips.

Corn tortillas are great if you heat them on an oiled pan and stuff them with whatever if you can have corn. Can't remember and too lazy to go back and check. ;)

I make my own salad dressings. An acid like vinegar or lemon, an oil like olive or corn oil (usually olive for me), some salt and a sweetener like honey. Most of my dressings contain a dab of mustard. Shallots are so good in dressing. Mince them tiny. Much milder than onions or garlic and so yummy.

Balsamic vinaigrette is so easy to make. About a cup of balsamic and half a cup of olive oil. A tsp of salt. A couple tsp. mustard, brown is best, minced shallots and honey to taste, maybe a couple tablespoons to cut the acid. Those are approximate measures. I don't measure. :lol: whisk it like crazy or if you want it creamy put it in the blender. It keeps for awhile in the fridge in a plastic container.

Link to comment
Share on other sites
looking4help Apprentice

I so feel for you and relate to everything you have posted.

You have received a great deal of great info from the posts before me.

I just want to add that I myself was so overwhelmed in the beginning and I think that in itself was even a bigger weight on my already depressed state.

About 3 weeks ago I gave up and just went to chicken and rice. I can't tell you how very much that helped! Plain, simple and easy. It gave my intestines time to heal. I gradually introduced a bit more here and there and am feeling so much better.

Hang in there! You are NOT alone! We are here and don't let unknowing, uneducated people drag you down!

It does get better!

Link to comment
Share on other sites
aderifield Apprentice

Hi, Gia, I am feeling exactly like you describe. I am ten weeks into this process and have developed more symptoms than I sought relief from in the first place. My latest is the itchies. I itch. I itch. I itch. I sit with my hands cupped together all day to keep myself from scratching. It is driving me insane! I have gone out and gotten all the gluten free products I can find - new toiletries, new cleansers - and still, I itch. I often feel like something is biting me. I get stinging sensations, but never find any visible mark. I can feel cysts under the surface, but they never break through. I am constipated to the point that nothing I do - not even popping two Exlax (pretty harsh) brings on relief. I'm more distended than ever though I must admit, my overall body inflammation is down. I put on some shoes today that used to fit tight and now, they are loose. I'm so tired and sleep is always welcome especially, after eating. Eating wears me out. I'm having baby migraines regularly whereas, they used to visit only once or, twice a year. My brain is in a state of non-recognition - it doesn't recognize anything I'm suppose to be doing or, it does, but it just as quickly forgets and things are starting to pile up. My life seems lonely and I find myself lost in feeling like this will never end. My new doctor put me on a fairly high dose of Cimbalta today for this reason and I must admit, I need something.... I am getting so tired of having someone feel obligated to tell me how horrible I look every time I walk out my door! I want to scream out, I KNOW THAT! My face is more swollen than ever in some areas yet, bc I have in fact lost inflammation overall, my facial skin is sagging and newly wrinkled in others and I look totally different - like I've aged ten years in two months.

However, I do have good days. I measure my success by asking myself on those days, if I feel better than I felt the last time I felt good and usually, the answer is, yes. I am further encouraged by the fact that my good days have started spilling over to a second good day and then, half of another day. I was amazed to have woken up one morning and lying there, realized I had no pain in my body and for that one day, I felt completely healthy - a feeling unbeknown to me in many, many years. To be free of pain for a day - no distention, no joint aches, no headache, no rumbling intestines - was a blessing that I think was probably worth all the other days and right now, I am having a really hard time dealing with having those good days jerked away, feeling like I am inevitably stumbling backwards when I want so badly to continue forward.

I think I have just now made a connection to nightshades. It seems like I get these flares after eating tomatoes and potatoes and mushrooms so, I am taking them out of my diet immediately.

Point is, be patient with yourself and your recovery. Own your illness and your right to be frustrated by it. Weep for your healthier days when the need possesses you. Know that you probably have some curves and bends in the road ahead of you and once you've had your cry, return focus to the road ahead. I truly believe that our resolve will bring us health.

Good luck to you.

Link to comment
Share on other sites
Gia Newbie

Wow ty e1 for the advice yes I do know it is going to be a long haul. My roommate is trying to accomadate but I really don't think they relize just how little exposure it takes to get bad which for me isn't much these days. I am broke out everywhere and think I will itch to death lol....I just don't understand after all this time why the itchies started now and wow with a vengence. I am so overwhelmed I really don't know where to start, and well the kitchen here is not going to be an easy thing to fix, not fair to change their life style and its not my home really..... I am so confused and really am trying to suck it up and go farward its just so hard and I just don't know where to start. My belly looks like I am about 6 months pregnant and really am misserable. It doesn't help the depression is so bad, and in a really terriable state in my life pretty much homeless and my disablity wouldn't support nobody really. I am sorry to whine truely I am. I am lost and this is not me I usually am the 1 with the answers and the fixer of things. I am just so confused and overwhelmed.....sorry

Link to comment
Share on other sites
aderifield Apprentice

Don't be sorry. There is a lot of uncertainty that goes along with this disease.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,072
    • Most Online (within 30 mins)
      7,748

    Jannette
    Newest Member
    Jannette
    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
      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
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @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
      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
      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...