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

I'm New To The Forum

Walter S

By Walter S
in Coping with Celiac Disease

Recommended Posts

Walter S Explorer
Walter S
Posted

Hello everyone. I am new to this forum. I have a double diagnosis that I got after being out of work and sick for months, and having tests, etc. I have been diagnosed with Crohn's disease and celiac Disease. Yesterday (Easter), I was at my parent's house for the hoiday. I have only been on the gluten free diet for a week now. There was so much food all over the place that everyone was eating and enjoying that I could not have- which was tough. So, I gave in and I ate a ver small piece of chocolate. I got sick from it so bad that I had to leave and come home early. I've been having diarrhea with bleeding, nausea, vomiting, and awful exhaustion, weakness/dizziness, etc. I called the GI Dr. this morning. They say he'll be in tomorrow and they will leave a not for him. If things get bad/continue then they say go to the hospital. I have had enough of this whole thing already, and from what I understand, I have to eat gluten free for the rest of my life! Any advice would be helpful. I don't feel good at all today!

:angry::(

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

Celiac.com Sponsor (A8-M):


Jestgar Rising Star
Jestgar
Posted

I'm sorry you feel crappy today, Walter. It does get better.

The first few weeks/months are a bit overwhelming, but once you get some things you like and trust, reading labels in the grocery store becomes less of a trial (although no less tedious). Start with well cooked veggies and rice and add on from there.

And welcome to the board!

dlp252 Apprentice
dlp252
Posted

Hello and welcome Walter! I too am so sorry you are feeling so badly! I agree, it does get better eventually but is quite tough in the beginning.

chrrsn Newbie
chrrsn
Posted
Hello everyone. I am new to this forum. I have a double diagnosis that I got after being out of work and sick for months, and having tests, etc. I have been diagnosed with Crohn's disease and celiac Disease. Yesterday (Easter), I was at my parent's house for the hoiday. I have only been on the gluten free diet for a week now. There was so much food all over the place that everyone was eating and enjoying that I could not have- which was tough. So, I gave in and I ate a ver small piece of chocolate. I got sick from it so bad that I had to leave and come home early. I've been having diarrhea with bleeding, nausea, vomiting, and awful exhaustion, weakness/dizziness, etc. I called the GI Dr. this morning. They say he'll be in tomorrow and they will leave a not for him. If things get bad/continue then they say go to the hospital. I have had enough of this whole thing already, and from what I understand, I have to eat gluten free for the rest of my life! Any advice would be helpful. I don't feel good at all today!

:angry::(

Hi Walter,

I am sorry that you feel so bad today. It is very difficult to go into a gluten free diet. My little girl, who is 2, has Celiac's Disease and we have all gone gluten free to make sure that she never feels different when she is at home. I know the trouble that comes from picking up something in the supermarket that you have eaten all of your life only to find that it is now something that you cannot eat. But it gets easier and you learn to like the gluten free food and you learn to recognize the things that you can eat and the ones that you cannot. My little girl, like you, suffers severely when she does eat gluten. The pain she feels and the pain that I am sure that you feel today, when she eats something that is gluten containing cannot be worth the second of joy that you get eating that comfort food. There are lots of chocolates and sweets and treats out there that you can eat. I found that caramilk bars are okay and actually the gluten free pretzels that you can buy are really good. You should also see if there is a support group in your area for Celiac's sufferers. The support and recipe exchange and access to information from others in your situation would be amazing.

Things will get better and I hope that you too will FEEL better soon.

Good luck. ;)

RiceGuy Collaborator
RiceGuy
Posted

I would also echo the comments made thus far. It truly does get easier, and you won't feel nearly as bad about having to avoid certain foods. Especially with the new found sense of well-being you'll enjoy. There are numerous gluten-free foods to take the place of those made with wheat and related grasses. Breads, pastas, cereals, etc are all still there for you. I know it can seem overwhelming at first. We were all where you are at one point.

Do check out Open Original Shared Link pastas. They are widely regarded as the finest gluten-free pastas around, and many on this board (including myself) will tell you they taste every bit as good as wheat pastas. I think they are actually better. You could serve it to your gluten-eating friends and they'd never know the difference!

Truthfully, I have far more variety in my diet now than I ever did before going gluten-free. The typical American diet is very limited, though most people never realize it. For instance, there are at least twenty different grains, legumes, and such from which flours are made that are fairly common in the gluten-free diet. How many grains are used for flour in the typical American diet?

Also, making your own breads, pizzas, etc will really go a long way in terms of variety and food value, not to mention cost savings. Even if you don't happen to be a proficient cook, you can do quite a bit, and the members of this board can help you get there.

Susanna Newbie
Susanna
Posted

Hey, Walter--sorry about your double diagnosis. The good new about your celiac diagnosis though, is that the cure is in the food--no meds, no surgery--you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

1. Know that you will grieve your old favorite gluten-filled foods. You will probably grieve a lot at first (a couple of weeks after I got diagnosed, they were toasting bagels I couldn't eat at work, and they smelled so good I had to leave my department for a while, it was too hard to be around it!) I actually tear up when I see a brioche sometimes still. Grieving is normal. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea.

2. Know that it will take time (months, probably) to figure out what to eat (it took me 6 mos.) and during this time, it'll be kind of a daily challenge to plan meals. Every time you go to the store it'll be a challenge to choose groceries. Strategy: Budget more time for meal planning, shopping and cooking. When you go to the grocery store, plan on an hour--don't bring kids or friends. Go the bathroom before you start grocery shopping. Bring your reading glasses--read every label. The good news is, THIS GETS MUCH BETTER OVER THE NEXT SEVERAL MONTHS AS YOU GET USED TO TO THE DIET.

3. It may take a while for your gut to heal, depending on how damaged it was at the time you went gluten free. So, you are going to have to be patient with your body--some people feel better immediately after going gluten-free, but most of us take longer than that. Don't give up if you don't see instant results. Strategy: Maximize your general health by getting enough rest, water, exercise, and limiting stress. Maximize your digestive health by limiting foods that are hard on the gastrointestinal tract until you're feeling better: limit irritants like dairy, caffeine, alcohol, and fried foods--these are all hard to digest--go back to them when you feel your gut is recovering.

4. Accept right now that it will be YOUR job to teach those around you about your diet

UR Groovy Explorer
UR Groovy
Posted

Hi Walter,

Welcome

It's a wild ride. Your life will probably change in a lot of ways, and things will become a little clearer - and then, a little unclear - and then clear again - and so on...

There are a lot of people on this ride. This forum can help fasten your seatbelt, or warn you of an upcoming loop de loop.

Hopefully you won't sweat it too much - I sweat it sometimes, but, overall, it's not so bad. In some ways, it can be fun - like when you make your first loaf of gluten-free bread, or have a first taste of Redbridge Beer, or brag about your last trip to the bathroom.

Fasten your seatbelt & enjoy the ride, Walter

kat

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

Celiac.com Sponsor (A8-M):


TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Welcome Walter.. it does get better. I know that is just a repeat of all that has already been said, but I cant stress it enough.. you will get better. It takes time and practice, you will be amazed on how much better you feel...

I hope you feel better soon!

Walter S Explorer
Walter S
Posted
  • Author

Thank you for the advice everyone. It is a big help and it is nice to know that there are support groups out there to help! The double diagnosis is truly a pain and I never know which thing is flaring on me or if it's both at once sometimes...

Archived

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

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


  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748
    JMF
    Newest Member
    JMF
    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.