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

Newbie


wolfmare

Recommended Posts

wolfmare Newbie

Hi. I have recently become aware of glutens affects on my body, and a miraid of symptoms that I have experienced that seem to likely be gluten related. I stopped gluten completely just a couple weeks ago, after having stopped dairy several months back.

I was really stating to feel GREAT! Less pain, more energy, clearer head......

So today I stopped at the store for some Meletonin(I am an overnight and it helps with sleep)and I walked out with peperidge farm turnovers- never even thinking....and then realized, and cooked them any way and ate them...felt awful when I woke up..came to work where there was pasta..and ate that too! I stopped white pasta a long time ago...

This really felt like binge type eating, although it wasn't a huge amount- and I feel a lot of pressure in my stomach. MY stomach for years would bulge out like I was nine months pregneant at times. I really want to feel better, and I emptied my cabinets at home and gave away all my "health" food that still contained gluten.

I am just seeing all these symptoms that have been creeping up on me for years, including a post I just saw on panic attacks.

I guess I just really need support... I am really in pain right now. I wrote that meaning emotional.... but physical too..my stomach is pained!

Good lesson. If I had doubts, it is teaching me something. I will peruse the site more- but really wanted to reach out and talk to someone- I am just feeling overwhelmed and hating that I hurt myself.

All the places to post had me a bit confused- so sorry if I put this in the wrong place. :unsure:

d


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



Celiac.com Sponsor (A8-M):



mushroom Proficient
Hi. I have recently become aware of glutens affects on my body, and a miraid of symptoms that I have experienced that seem to likely be gluten related. I stopped gluten completely just a couple weeks ago, after having stopped dairy several months back.

I was really stating to feel GREAT! Less pain, more energy, clearer head......

So today I stopped at the store for some Meletonin(I am an overnight and it helps with sleep)and I walked out with peperidge farm turnovers- never even thinking....and then realized, and cooked them any way and ate them...felt awful when I woke up..came to work where there was pasta..and ate that too! I stopped white pasta a long time ago...

This really felt like binge type eating, although it wasn't a huge amount- and I feel a lot of pressure in my stomach. MY stomach for years would bulge out like I was nine months pregneant at times. I really want to feel better, and I emptied my cabinets at home and gave away all my "health" food that still contained gluten.

I am just seeing all these symptoms that have been creeping up on me for years, including a post I just saw on panic attacks.

I guess I just really need support... I am really in pain right now. I wrote that meaning emotional.... but physical too..my stomach is pained!

Good lesson. If I had doubts, it is teaching me something. I will peruse the site more- but really wanted to reach out and talk to someone- I am just feeling overwhelmed and hating that I hurt myself.

All the places to post had me a bit confused- so sorry if I put this in the wrong place. :unsure:

d

Oh, I do feel the pain you are in, and the misery and guilt and all those other things.

Well, the one thing your binge has done for you, besides making you feel dreadful, is tell you that you really should not eat gluten. Like me, you stopped pasta and dairy first--well, for me I just stopped lactose because I had just read one of Barbara Kingsolver's books (she has a celiac daughter, and they told her she might be able to tolerate yogurt)--and then I realized (much later) that there was more to the problem. You woke up a lot quicker than I did, I must say. I waited until I developed rheumatoid arthritis :(

So, do you know why you went on the binge? Did you just eat them because you had them and then decided you might as well be hung for a sheep as a lamb? Or was it a real gluten craving? I am asking this because so many here on the forum have a hard time staying gluten free without the official diagnosis of celiac. For some of us it doesn't make any difference not to be diagnosed, but others definitely need that official medical imprint to stay on the diet. Only you know the answer to this in your heart. And the reason I ask this question, as you may know, is that if you wish to be tested you must keep eating gluten until your testing is complete otherwise you risk getting a negative result because your gut will have healed somewhat before the biopsy and your body will have stopped making the antibodies which is what the blood test measures.

If you have really purged your pantry it sounds like you are serious about staying gluten free though. Just nattering away here, talking to myself as much as you, lol, but letting you know you can come here any time and someone will respond and try to help you through whatever it is. I hope you are feeling better soon.

flourgirl Apprentice

Hi and welcome! You're not alone with having a difficult time with the diet, as you'll see when reading along. Many have trouble at first. We often crave the very things that hurt us! For others of us it's a no brainer. I will never, ever put myself willingly in a position to be so sick again! I've been gluten-free for 1 1/2 years and am still struggling to regain my health. I think the damage was so great that it opened the door for other immune disorders and inflammations. Want a cookie? Not on your life. I taught myself to look at gluten as rat poison. You'd never knowingly eat poison, would you? Same thing for us! I know you'll find your way with the diet and to good health. I'm glad you found your way here. Lots of info, lots of sharing with people who know where you are coming from, lots of caring from those very same people. Good luck to you! :)

OptimisticMom42 Apprentice

Hello Wolfmare,

Let me lend you that support you've asked for. I do understand.

Last night I dreamed that I was the editor of an online women's magazine for celiacs. While taste testing a blueberry-lemon bar recipe for an article, I realized it was not gluten free and began spitting it out, rinsing my mouth and listing in my mind all the things I could use to get this out of my system.

The thing is when I woke up, I still had the memory of what a really good lemon bar tastes like and I wanted to cry. I'm a horrible cook and my mutiple allergies make it so hard to substitute all the ingredients successfully. I'm mourning the loss of freedom to choose my food by taste and to share good food with good company. Let me say that again. I'm in mourning!

Have you read about the stages of mourning?

1. denial, isolation - I was sick for 6 months before I even went to a dr, then I went to 3 of them

2. anger - don't eat that in my house, don't you care about my feelings

3. bargaining - well, maybe if I only eat a little

4. depression - I'll never be able to have fun again, lots of days that I don't even get dressed

5. acceptance - not there yet

So, I'm somewhere between stages 3 and 4. Sounds like you are between stages 1 and 3. You don't want to beleive it and you've already given up so much.....how could this situation ask you for more sacrifice?

The good news is that there is a stage 5! And maybe knowing what is happening to you will lessen the anxiety you are feeling.

Hope this helps,

OptimisticMom42

wolfmare Newbie

Boy- It felt really good to come back here and see the responses to my earlier post. Joy/pain good.

I'm not sure if I am really even greiving food loss... I really want to feel better than they way I have for too long now. Heck, I even hardly struggled with letting go of cheese- my bestest "if you had one food on a deserted island, what would it be" choice. I am/was feeling mean to myself. And it worked, I hurt myself and took away the feeling good that was happening. This post and response really has helped to turn that around.

Just had a live-in break up with someone that really didn't get respect for others..maybe I missed that kind of treatment and had to treat myself like to feel comfortable!! :lol:

I also am in the waiting stage of the big bosses coming by next Wednesday to make an announcement....presumed and assumed to be that the facility I work in will be closing due to budget cuts.

I have a best friend in my horse that I have felt too lousy to ride.

I feel dragged, drugged and down too often, I really hope I will want to hang on to feeling better.

I strongly considered getting the biopsy, but really don't want to dope myself back up. If I feel better not eating certain foods, that really is enough for me. I have to belive this was just a little speed bump.

Thank you for letting me talk. Thank you for really hearing me. Thank you for understanding.

mattathayde Apprentice

dont worry, its going to take a good while to get used to reading labels, paying attention to the little things, and probably missing some items for a while. you will get to the point where you will re-read labels at least every few times you buy an item just to double check and make sure

i know that if at this point i ate all that i would be pretty freaking sick and im not a super sensitive celiac.

for the bloating and pain give mint and or ginger a try. natural brew makes a ginger ale from a lot of real ginger and is pretty strong but it will help relieve the pressure

-matt

Tra cy Newbie
Hi and welcome! You're not alone with having a difficult time with the diet, as you'll see when reading along. Many have trouble at first. We often crave the very things that hurt us! For others of us it's a no brainer. I will never, ever put myself willingly in a position to be so sick again! I've been gluten-free for 1 1/2 years and am still struggling to regain my health. I think the damage was so great that it opened the door for other immune disorders and inflammations. Want a cookie? Not on your life. I taught myself to look at gluten as rat poison. You'd never knowingly eat poison, would you? Same thing for us! I know you'll find your way with the diet and to good health. I'm glad you found your way here. Lots of info, lots of sharing with people who know where you are coming from, lots of caring from those very same people. Good luck to you! :)

I am 4 weeks in and have muscle aches brain fog bloating intestinal pain is this all normal? It feels worse since I have given up gluten...the reaction that is if it gets in my diet by accident. Why is dairy in question??? I eat it for protein but am willing to stop if it is the cause of continued pain.


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



Celiac.com Sponsor (A8-M):



mattathayde Apprentice
I am 4 weeks in and have muscle aches brain fog bloating intestinal pain is this all normal? It feels worse since I have given up gluten...the reaction that is if it gets in my diet by accident. Why is dairy in question??? I eat it for protein but am willing to stop if it is the cause of continued pain.

some times it takes a while to get the symptoms to go away, other times your still eating something that isnt agreeing with you.

the dairy is a question because a lot of celiacs are lactose intolerant at least for a while until they heal up

-matt

purplelion Newbie
I am 4 weeks in and have muscle aches brain fog bloating intestinal pain is this all normal? It feels worse since I have given up gluten...the reaction that is if it gets in my diet by accident. Why is dairy in question??? I eat it for protein but am willing to stop if it is the cause of continued pain.

Hi there,

After 30 years of suffering I.B.S. Chronic Fatigue and M.E. I went to a Natropath and had a 'VegaTest' for Gluten and other foods. I was found to be Gluten, Dairy, Oats , Lactose and Casin, and even Yoghurt ( which most can tolerate)intolerant. After removing these from my diet I was feeling sick when using soy milk, which I switched to many years ago. This also tested very high. Life can be very difficult as I react violently with some maize/corn and then not react with some baking mixes with corn in them. Fresh corn tested OK.

I had a 3.5 hour attack with CC corn chips and they list the ingrediants being only maize and vegie oil !! I also had a bad reaction, 2 hours long to Gravey mix and yet the ingrediants I considered to be safe for me.

Both these attacks started 3 hours after eating.

I am stressed to go out as I don't know when I will be struck down. We live in the country and it is easy to be caught far from home. I was caught 75km from home in a shopping centre the other day. Luckily I could buy a small bucket to be sick into, there and all the way home. This has happened twice in the last week. I now don't eat if I have to go out and also don't eat while I am out, however an apple seems to be OK. This situation is not good :(

I am trying the Paleo Diet of meat, seafood, eggs, vegies and fruit to get some relief.

My poor long suffering husband doesn't know what to think, he has no experience with all of this.

Doctors have been useless for me. I have had to put my faith into my Natropath and also the VegaTest. She has been so kind and understanding and has validated all that I have known for years.

Reading through what others have said I think that it is good advice to consider ALL Gluten and other foods we are intolerant to as rat poision because it is poisioning our bodies and making us sick and even killing us.

Hope this helps,

purplelion

mattathayde Apprentice
Hi there,

After 30 years of suffering I.B.S. Chronic Fatigue and M.E. I went to a Natropath and had a 'VegaTest' for Gluten and other foods. I was found to be Gluten, Dairy, Oats , Lactose and Casin, and even Yoghurt ( which most can tolerate)intolerant. After removing these from my diet I was feeling sick when using soy milk, which I switched to many years ago. This also tested very high. Life can be very difficult as I react violently with some maize/corn and then not react with some baking mixes with corn in them. Fresh corn tested OK.

I had a 3.5 hour attack with CC corn chips and they list the ingrediants being only maize and vegie oil !! I also had a bad reaction, 2 hours long to Gravey mix and yet the ingrediants I considered to be safe for me.

Both these attacks started 3 hours after eating.

I am stressed to go out as I don't know when I will be struck down. We live in the country and it is easy to be caught far from home. I was caught 75km from home in a shopping centre the other day. Luckily I could buy a small bucket to be sick into, there and all the way home. This has happened twice in the last week. I now don't eat if I have to go out and also don't eat while I am out, however an apple seems to be OK. This situation is not good :(

I am trying the Paleo Diet of meat, seafood, eggs, vegies and fruit to get some relief.

My poor long suffering husband doesn't know what to think, he has no experience with all of this.

Doctors have been useless for me. I have had to put my faith into my Natropath and also the VegaTest. She has been so kind and understanding and has validated all that I have known for years.

Reading through what others have said I think that it is good advice to consider ALL Gluten and other foods we are intolerant to as rat poision because it is poisioning our bodies and making us sick and even killing us.

Hope this helps,

purplelion

i would bet that the corn that is messing with you is either a) certain strains of it, B) certain genetically engineered corns, or c) a combo there of. i am not allergic to soy but my alternative medicine guy (similar to what you have gone to using) said it seemed like i was sensitive to genetically modified soy even though the silk soy milk said no genetically modified in it, he cleared me of the sensitivity and i havent had an issue with it a far as i can tell or at least no where near as bad as i was having.

-matt

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    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
      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
      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
      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
      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
      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.