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

Still Finding It Hard

Ebonyjade93

By Ebonyjade93
in Coping with Celiac Disease

Recommended Posts

Ebonyjade93 Rookie
Ebonyjade93
Posted

Just wondering if this is normal..

Been gluten free since march and things have improved alot but every now and again I'll get sick, I get nauseated then get sore stomach and feel like I have to go to the toilet all the time, I get D and my stomach is just very sensitive to like tight clothes or any pressure. When I'm not sick I am usually C so who knows what goes on there.

Funny thing is that I have worked out nothing that day could have affected me, so it had to be the day before because I baked gluten free cookies and a pear crumble with alot of dairy in it...

My questions are, could it be dairy? How do you be gluten free and dairy free!! what would I eat!!

Its kinda scary and I don't know what to do, should I see a dietitian? As you can see I am so confused about everything.

I really need some help with all this!! :(

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

Celiac.com Sponsor (A8-M):


lil'chefy Apprentice
lil'chefy
Posted

Just wondering if this is normal..

Been gluten free since march and things have improved alot but every now and again I'll get sick, I get nauseated then get sore stomach and feel like I have to go to the toilet all the time, I get D and my stomach is just very sensitive to like tight clothes or any pressure. When I'm not sick I am usually C so who knows what goes on there.

Funny thing is that I have worked out nothing that day could have affected me, so it had to be the day before because I baked gluten free cookies and a pear crumble with alot of dairy in it...

My questions are, could it be dairy? How do you be gluten free and dairy free!! what would I eat!!

Its kinda scary and I don't know what to do, should I see a dietitian? As you can see I am so confused about everything.

I really need some help with all this!! :(

Like you, I wasn't dairy free at first. I though, whatever, like I am giving that up too! Anyhow, fast forward------> I am basically dairy free now, basically. After you start to feel better w/out the gluten, you want to know what feeling completely better feels like! I have tried all the "milks" and it is my experience that Blue Diamond almond milk is the best. I actually prefer it now, but it took getting used too. I get the original, as it most closely mimicks dairy milk. It doesn't however have any of the protein that dairy milk has; soy milk does. I don't eat soy, as it has so many effects on estrogen( I personally don't think it is safe). I have recently started reincorporating cheese back into my diet, but slowly, and not too much at a time. I never had problems with yogurt, as it comes with the enzymes to digest it included! I choose greek yogurt to make up for the protein lost in almond milk. I use coffee mate in my coffee. The new company SO has just made an almond milk with added protein, however, to date, I have been unable to find it. I have been taking a good quality probiotic since I have been gluten free. I think that helps. Your gut has a lot of healing to do, and is lacking the enzyme lactase, which is at the beginning of your digestive tract. Heal that gut, then slowly add dairy back in, to see if you can handle it---my advice. I am studying to be a dietician, 3rd year, and thus far, this is what I have learned! Good luck; feeling better is better than eating dairy, I promise!

1desperateladysaved Proficient
1desperateladysaved
Posted

Check the natural foods dairy substitutes place in the store. They now have several milks, almond, rice, coconut are common. I have even seen hemp and hazlenut milks.

My personal favorite is Canned coconut milk. I can use it,guar gum, and sweetener to make a mock cream.

I can make my own cocunut milk. I put 4 cups of water in the blender. Add 1/4 cup almond meal flour. That is all I usually do, but one could add salt or sweetener.

DT

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Thank you both :)

I'm going to go dairy free for sure, just had another bad turn, woke up with the worst pains in my stomach!!

Can't do it anymore, and like you said lil'chefy, I want to know what it feels like being 100% better, I am so much better already but just sometimes I have issues like last night.

I will definitely have to try almond milk, I have tried rice milk and soy milk before and I actually love them, so thats a plus, just not sure what you would use to replace things like eggs (I try to stay away from eggs as much as possible cause I noticed I have issues with them).

I also do not drink anything with caffeine, so no soft drinks, coffee, and I don't even drink tea anymore, just good old water.

I will also have to try coconut milk as I have never tried that before so thanks DT for the info on that.

And hope your enjoying the course lil'chefy :D

Thanks again for both of your replies :)

justlisa Apprentice
justlisa
Posted

Coconut, rice and almond milks. But, I prefer coconut milk when baking.

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Thanks Justlisa, I will have to try the coconut milk in cooking :)

1desperateladysaved Proficient
1desperateladysaved
Posted

Thank you both :)

I'm going to go dairy free for sure, just had another bad turn, woke up with the worst pains in my stomach!!

Can't do it anymore, and like you said lil'chefy, I want to know what it feels like being 100% better, I am so much better already but just sometimes I have issues like last night.

I will definitely have to try almond milk, I have tried rice milk and soy milk before and I actually love them, so thats a plus, just not sure what you would use to replace things like eggs (I try to stay away from eggs as much as possible cause I noticed I have issues with them).

I also do not drink anything with caffeine, so no soft drinks, coffee, and I don't even drink tea anymore, just good old water.

I will also have to try coconut milk as I have never tried that before so thanks DT for the info on that.

And hope your enjoying the course lil'chefy :D

Thanks again for both of your replies :)

A friend raises quale for eggs. She said that their eggs have a different protein and some people can tolerate them instead of chicken eggs. I hope you or others can try this out. I hope you have some good indicators if it is a problem. I used Spelt and Kamut for years instead of wheat thinking I was okay, but I wasn't.

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

Celiac.com Sponsor (A8-M):


Solandra Rookie
Solandra
Posted

If you Google "Gluten Free Vegan Recipes" there is SO much stuff... There's a lot of hype about soy, but I think a lot of that is from A. idiots and B. the dairy industry. I eat a little bit of tofu here and there, and I love almond milk the best. You can use flax seed or tofu in place of eggs in baking, by the way. You can make tofu scrambles that are delicious. Anyway, here's a good article on soy and why not to be scared of it:

Open Original Shared Link

And here's some books I like:

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Great-Gluten-Free-Vegan-Eats-Allergy-Free/dp/1592335136/ref=sr_1_2?ie=UTF8&qid=1345862964&sr=8-2&keywords=gluten+free+vegan

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Welcoming-Kitchen-Delicious-Allergen--Gluten-Free/dp/1402771851/ref=sr_1_3?ie=UTF8&qid=1345862964&sr=8-3&keywords=gluten+free+vegan

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/The-Gluten-Free-Vegan-Delicious-Animal-Free/dp/1600940323/ref=sr_1_1?ie=UTF8&qid=1345862964&sr=8-1&keywords=gluten+free+vegan

And while not specifically being gluten free, a lot of the recipes can be adapted using gluten free ingredients.

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/The-Happy-Herbivore-Cookbook-Delicious/dp/1935618121/ref=sr_1_1?ie=UTF8&qid=1345863005&sr=8-1&keywords=happy+herbivore

I get down, and then I get cookbooks and look online for ideas.. it's like learning how to cook all over again. :)

Javamom Newbie
Javamom
Posted

Glad that I found this thread. I am in agony. I woke up in tears of pain and discouragement today. I thought I was getting better, really! My heartburn was going away. Now, I find that I have traded heartburn for stomach aches instead. I am on day 2.5 of mostly constant stomach ache.

I suspect dairy is the culprit. Oy vey, what will I have to give up next? It makes me dizzy just trying to figure it all out.

See if you agree:

Yesterday I ate greek yogurt (a favorite of mine) for breakfast and coffee with sugar only. I only ate it because I had noticed the day before that if I ate, the pain went away for a while. Halfway through the yogurt, I stopped and threw it away. Couldn't finish it.

For lunch, I ate some cheddar cheese, carrot sticks, nut meal crackers, and a quinoa salad. Within an hour, I was nauseated and almost left work early to go home and lie down. Evntually, the nausea passed away, and my stomach was just a little achy.

Then at dinner I did something really stupid and tried eating at a restaurant that we like. I ordered roast pork, corn tortillas, and (you guessed it) melted cheese sauce (which I am 99% sure had no flour in it). Dinner actually went well, and I didn't have any nausea afterward. But here it is morning time and I have another stomach ache.

Similar experience earlier in the week, I remember drinking 3 small glasses of milk at dinner. I love cold milk.

I think I am going to have to kick dairy. Maybe I'll get it back later?

justlisa Apprentice
justlisa
Posted

Java...

That always sucks...

I had my "inner talk" last night...I am giving up dairy, corn, nightshades and sugars...starting today.

I am going to miss my hot tea with cane sugar (two in the morning to get me moving. My only real sweet.) Losing potatoes, cheese and tomatoes is going to be really tough, too. Sigh.

Well... I really just wanted to say...I feel your pain.

Ebonyjade93 Rookie
Ebonyjade93
Posted
  • Author

Thank you for all your replies!!

I will have to see if I can get my hands on quail eggs, and I'll just keep testing what it might be, if cutting dairy doesn't make a difference, I will cut out soy. Its a pain, but rather that pain than physical pain!!!

I have never tried tofu so I will have to, I bought rice milk yesterday, I love it!! I will try almond milk next and see what that is like ;)

Java I am so sorry you are going through so much pain :( I get the same as you but my heart burn is just acid reflux, no burn :S I thought I was getting better too, but nope my body had other plans!

I love cold milk to Java :( but I think it is time we gave it up for a while, hopefully not forever!! I am determined now to heal my villi, I don't know much about probiotics so any information would be gladly accepted!! I am just trying to learn as much as I can :)

I really truly hope you feel better asap Java, if you want someone to talk to about it all, I'd be glad to, I feel so alone while going through this sometimes and just want someone to talk to that has been through all of it aswell!!

Javamom Newbie
Javamom
Posted

Thanks everyone, yes I am feeling better! I am not sure yet on the dairy, but I am going to keep vigilant in figuring it out. My stomach pains eased yesterday to the point that I felt like I could eat again. I have had just a little dairy since then, and things seem ok. I am trying to be really careful about everything, and paying more attention to CC possibilities.

I think that I am going to try almond milk, regardless. It's something that I have always wanted to try, but could never justify the expense. I think it will be a good thing for me. I may try rice milk too. Wonder which of the milk subs taste the most like milk?

This weekend we went to several health food stores (on the other side of town) to see what they had to offer, and try not to pass-out at the prices! I bought a gluten-free flour mix to try my hand at a loaf of bread. So far, my husband has not liked the pre-baked ones we have tried. I am going to seek out a gastroenterologist (sp?) and see if they can give me a diagnosis. Whether I have celiac or not, I am positive that I feel better without gluten!

Javamom Newbie
Javamom
Posted

I am going to miss my hot tea with cane sugar (two in the morning to get me moving. My only real sweet.) Losing potatoes, cheese and tomatoes is going to be really tough, too. Sigh.

Well... I really just wanted to say...I feel your pain.

I wonder if you could replace the sugar with agave? Not sure, may be ignorance talking here. Thanks, it helps to have people that "know" your pain.

tctwhite Apprentice
tctwhite
Posted

Glad that I found this thread. I am in agony. I woke up in tears of pain and discouragement today. I thought I was getting better, really! My heartburn was going away. Now, I find that I have traded heartburn for stomach aches instead. I am on day 2.5 of mostly constant stomach ache.

I suspect dairy is the culprit. Oy vey, what will I have to give up next? It makes me dizzy just trying to figure it all out.

See if you agree:

Yesterday I ate greek yogurt (a favorite of mine) for breakfast and coffee with sugar only. I only ate it because I had noticed the day before that if I ate, the pain went away for a while. Halfway through the yogurt, I stopped and threw it away. Couldn't finish it.

For lunch, I ate some cheddar cheese, carrot sticks, nut meal crackers, and a quinoa salad. Within an hour, I was nauseated and almost left work early to go home and lie down. Evntually, the nausea passed away, and my stomach was just a little achy.

Then at dinner I did something really stupid and tried eating at a restaurant that we like. I ordered roast pork, corn tortillas, and (you guessed it) melted cheese sauce (which I am 99% sure had no flour in it). Dinner actually went well, and I didn't have any nausea afterward. But here it is morning time and I have another stomach ache.

Similar experience earlier in the week, I remember drinking 3 small glasses of milk at dinner. I love cold milk.

I think I am going to have to kick dairy. Maybe I'll get it back later?

Something I noticed right off the bat was the coffee. A lot of people are sensitive to coffee. I am one of them and it makes me so sick. Im a coffee nut and its a huge set back for me. That could be part of your troubles too. Maybe you are having too much dairy. I can only handle so much at the time. And yogurt gets me every time for some crazy reason.

HauntedEyes Rookie
HauntedEyes
Posted

You mentioned having quinoa. That could be the problem ... perhaps it wasn't rinsed well enough? Quinoa has a natural resin coating it that protects the grain from critters. The resin can cause stomach problems if it wasn't rinsed off well.

Javamom Newbie
Javamom
Posted

You mentioned having quinoa. That could be the problem ... perhaps it wasn't rinsed well enough? Quinoa has a natural resin coating it that protects the grain from critters. The resin can cause stomach problems if it wasn't rinsed off well.

Thanks! The quinoa salad was from the deli of a local health food store. I actually did figure out what the culprit was. Believe it or not, it was my vitamin tablets. I keep a log of everything that I put in my mouth, and I was able to backtrack my stomach aches to my supposedly "everything-free-vegan" vitamins. So, I am going to switch to a different brand that I have used in the past.

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.