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

Frustrated!

chrissygirlca

Recommended Posts

chrissygirlca Apprentice
chrissygirlca
Posted

Hi I've been diagnosed with celiac disease about two months ago I'm 26 5'6 n 91lbs ...3 yrs ago i used to weigh 115 went down to 99 stayed that for about 4 months then went to 94 over last week of serious glutening went down to 91. i also used to be d cup went to c half of my weight is there lol. I hate how i look when i look in the mirror all i see is bones. My mom cries when she sees me. My dad tells me i look sick. people ask me if i eat at all.

it has been very hard for me im very sensetive and emotional. I get depressed easily even before diagnosis never mind now. Food was my life i used to eat out all the time go for birthdays dinner then club. Mcdonalds after club. Food was my comfort and i love but hated at the same time that i would never gain from it. For about 3 yrs started etting sick from everything. Anythingbi ate would cause pain..d...gas. I stopped going out was scared after going out a couple times and having to ask my friends to pull over to timmies to use the bathroom about three times on the way to go out. I never wanted to go anywhere that didn't involve easy acess to a bathroom. Finaally got diagnosed with celiac.

At first after diagnosis i stopped eating junk came reasearched alot stoped eating anything processed. It seemed like it was getting better but then it started getting a lot worse. I had a lot of slip ups in the beginning with gravey/sauces/spices...and I get really depressed. I cry about 2 3 times a day I get gas all day people at work make fun of me I work in a mall and I'm 26. They call me names and talk about me. I get tired very fast Which causes me to be slow with not much energy..and I work in a salon my boss screams at me when im slow. I hate going to work.I'm surprised I haven't gotten fired yet.

I started bringin my own lunch rice/potatoes/ vegetables meat for breakfast gluten free dairy free pancakes still got gas. If I slipped up and accidenlly ate gluten would be horrible. I'm scared of sauces dips even it they are gluten and dairy free. I'm scared to eat anything.

I tried at first using lactaid with dairy because I used to get the d's really bad without it and still get gas but not as bad d. I tried soy milk almost as bad as eating gluten... extremly painfull cramps to the point can't sit up...bloating stomach rumbling the big d..brain fog..extreme dizzyness.

Friday I had gluten free cereal for breakfast. I cut up banannas and put it in the cereal. Had small pain but after having d all week n losing 3 lbws pain was better than that...went all day without eating running errands then at dinner had rice n steak no gravy I love steak. Thought this would be a good chance to eat the meats I love to help me get over not being able to ea anything. It made me sick d came back in the night. Oh I slipped and have in to two small jelly beans midday gluten free. Only got the d couple hrs after aftet dinner.

Sat had cereal n fruit again small pain. Salad n beef for lunch. Got pain no d.. dinner lobster salad and beef. No pain till after drinking two small glasses of cold water the incredible pain. This morning had the cereal n bananas n strawbwerries at 6am. Had incredible pain..n small gas. Couple hrs later had eggs and lactose gluten free butterball turkey susages n ketchup. could hardly finish the eggs made me neasous (sp?) stopped came back finished the susages in attempt to get in as much calories as I could was ok. Couple hrs later incredible pain lots of gas. Only now attempted too eat lombard rice cakes n a trail mix. Got bad d now I stack up on immodium elwhi doesn't seem too work any more after taking 3 at once one day and getting reaaly sick.

I don't know what to do anymore I'm extremly depressed/grumpy espeecially seeing people eat foods I can't I feel like I can't eat anything i wanna cry watching them food was my life before. Now i i dont know what to eat so much pain n scaRed of foods not staying in my stomach. no sugar no spices..no sauce.im scared to lose more weight cause I'm already skin n bones I don't know what to do any more. sorry for the long message and I'm bad at explaning. Plus I'm using touch screen so sorry for errors so hard to fix grr.

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

Celiac.com Sponsor (A8-M):


lynnelise Apprentice
lynnelise
Posted

I wish I had some better advice for you but I'm not sure where to go from here. Maybe go back to the doctor? Is it possible you could have an issue with your gallbladder maybe? My symptoms were similar minus the weight loss when my gallbladder quit functioning. I couldn't eat anything without getting sick.

Also maybe other grains are affecting you. I would try eating just meat, fruits, and veggies. No processed foods like cereal or anything for a few weeks. Then you could start slowing adding in grains like rice?

Good luck and prayers to you! I hope you get on the road to recovery quick! I hate that you are so miserable right now!

GFreeMO Proficient
GFreeMO
Posted

It kind of sounds like you are getting cross contaminated or maybe still getting gluten. Are you sure that your cereal is gluten free? Cutting boards, counters, shared kitchen. etc.

As far as getting calories, Nuts and peanut butter have a lot or calories as do cheeses. Gluten free brownies, cupcakes, candy etc. Maybe you are not eating enough. What is an example of what you eat for a day?

I hope you feel better soon. I have been there and I understand how you are feeling as far as not eating out etc. It sucks..But, you are not alone. All of us here go through the same thing. Hang in there!

chrissygirlca Apprentice
chrissygirlca
Posted
  • Author

Thank you for your advice..In the beginning I was eating in the mall but like potatoes n meat then stoped n only ate gluten free I tried glutino vanillia cookies soooo good but got the d right after..but my problem was not knowing if it was that which made me sick or maybe something I ate the day before idk how long it takes to react..I heard it takes a week or so for it to feel better so sometimes idk if I'm still reacting from something from the day before or its the thing I just ate its so confusing. I do know that gas is also from dairy so I try to eat nothing with dairy and I know some people get sensitive from ceasin and whey n soy..I kno my cereal was gluten free got it in health section n I checked. Not sure if it was the acid in the fruit the cereal or maybe from the.reaction to the soy milk I had the day before its sooo hard to tell..how do u know? I get so frustrated cause my sis is all like oh your just not eating healthy you don't need to eat gluten free food just eat rice and meat but really that gets boring lol just eat healthy they don't get it and I'm the only one in my fam with it. I just saw the pots and pans thread it could even be that idk. I feel like I'm being so paranoid or picky saying ohhh I can't use that pan or I can't use that dressing. even going to a resturant one day the waitress fought with me cause I asked her if the meal had soy sauce and she was like ohh theres no wheat in soy sauce. I was like there is wheat in most soy sauce..she was arguing with me she said again no there's not you can eat this meal. I said lady there is wheat in soy sauce so she went to ask the chef then came back and said unfortunatly there is wheat in you meal but here's a list if the food you can eat...:| I wanted to knock her lol my friend was just watching in silence lol its so annoying..I guess ill get used to it eventually. I'm trying to stay away from dairy as much as I can I guess the only way ill know is to cut out everything completly change all my pots and pans...its just hard when your the only one you watch everyone eating all there food n you have to eat your seprate food and hope you don't get sick..and they look at you like oh this girl even needs seprate cutlery..

I used to always go out for social events now I feel uncomfortable not knowing f I'm gonna be sick or if its dinner everything seems to revolve around food when you go out..or maybe it just feels like that cause I'm new to this..

the lady at work gave me lindor truffles for christmas.. I was just like ohhh wut do I say excuse me but I'm allergic to that lol. I guess ill just give it to my mom..I'm going to nutritionist waiting for them to call to make the appointment but it takes a while....just tired of looking likei could be the model of the skeleton for an anatomy class or something lol

T.H. Community Regular
T.H.
Posted

It could be gluten issues, or other issues, but some things that might help.

1. I'd start keeping a food log, because you're right - it's really hard to tell what you are reacting to when it can be a day or two later that you react. But the log can help you find a pattern.

2. To make the pattern even more noticeable, seriously, if you can do it - plan out like 2 or 3 daily menus, and then eat the same one 2-3 days in a row, then the next menu for 2-3 days, and then the next. Try not to have anything the same on the menu, so if you are reacting, the reactions may space out. And that means nothing the same, not even the oil or salt, because these typically have additives or CC to things so if you have an allergy or sensitivity, these could set them off.

3. Other things you might want to check into: fructose malabsorption. Not uncommon to develop in people with digestive trouble, often involves painful gas and D, and it can involve grains, veggies, fruits - lots of things. There are lists of safe and unsafe foods on the web for this, if you look. :-) Sulfite sensitivity and histamine sensitivity are other issues. Also possibly parasitic infections in the digestive tract, too.

4. If you are thinking this is gluten, however, here's some ideas for those who are really sensitive, because it is SO easy to get zapped if you are. To see if gluten might be a problem (or possibly additives or pesticides or preservatives), here's what I'd do.

- ditch all grains. They all have some level of CC with gluten, pretty much. Low, but there.

- ditch the dairy and soy.

- wash and peel all your fruit and veggies for right now - mulches, sprays, coatings, etc... can contain gluten and give them low levels of gluten, too.

- for a week or two, ditch nuts, seeds, and beans - CC risk due to processing.

- get your meat pre-sealed from the butcher, not the ones that are prepared in the local butcher shop. Usually, the local butcher also makes meat with coatings on it in the same area, or near, where he cuts up the plain meat you are buying. CC risk, sadly.

- Ditch oil and spices for a little while - CC risk. If you have to use salt, RealSalt seems to be very allergen conscientious, or Field Day Mediterranean Sea Salt. But if you ditch your iodized salt, you probably want a liquid supplement for iodine to replace it. (iodized salt has corn to stabilize the iodine)

This is what I ended up doing in the end, essentially, and I finally started getting better. At that point, then you can start adding things in, but you'll be feeling better (if this is what the issue is) and so you can tell when something bad is added, you know?

frieze Community Regular
frieze
Posted

I would second the grain free trial....at least cereal free...gluten free processed cereal is not necessarily gluten free, but gluten very light.....and maybe not light enough for you!

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.