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

Pain, Daily Sweats

Budew

Recommended Posts

Budew Rookie
Budew
Posted

5 years gluten free and still sick. I have eliminated all animal products, gluten, nightshade fruits and vegetables.

I basically exist on coffee, water, apple juice, vitamin water, rice, apple, pear, watermelon, carrot, celery, lettuce, brussels, asparagus, mushroon, onion, and raw cashew.

I have chronic generalized pain, sores on the skin that don't heal(form thick skin over the sores that peel), chronic cough & congestion with sweats 1-2 times a day, occassional nausea, and now migranes.

I've recently eliminated foods with high to moderate salicylate.

My heart sunk yesterday when I read about Sarcoidosis.

I'm lost, any suggestions?

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

Celiac.com Sponsor (A8-M):


Pilgrim South Rookie
Pilgrim South
Posted
5 years gluten free and still sick. I have eliminated all animal products, gluten, nightshade fruits and vegetables.

I basically exist on coffee, water, apple juice, vitamin water, rice, apple, pear, watermelon, carrot, celery, lettuce, brussels, asparagus, mushroon, onion, and raw cashew.

I have chronic generalized pain, sores on the skin that don't heal(form thick skin over the sores that peel), chronic cough & congestion with sweats 1-2 times a day, occassional nausea, and now migranes.

I've recently eliminated foods with high to moderate salicylate.

My heart sunk yesterday when I read about Sarcoidosis.

I'm lost, any suggestions?

You sound like me, only you can eat more foods than I can! I am finding, however, that taking VERY GOOD PROFESSIONAL, not over the counter, Digestive Enzymes makes all the difference in the world. I really think every celiac person should be taking them. No, I don't sell them and this is not a sales pitch. I just know how they have helped me and are helping me. I really think that one day soon, my list of foods that I can eat will increase due to the healing action of the enzymes. The ones I use comes from Transformation Enzymes Inc in Houston, Tx. I get them mailed out to me. Anyway, don't get discouraged! Keep trying new things, I know its hard...I have to do it all the time...we just can't give up! But, you sound like a classic person that needs enzymes. I know if you called the company I get mine from they could help you figure out what you need. There are probably other companies that can do that too! Plug along, one step at a time! Hope this helps..

Budew Rookie
Budew
Posted
  • Author
You sound like me, only you can eat more foods than I can! I am finding, however, that taking VERY GOOD PROFESSIONAL, not over the counter, Digestive Enzymes makes all the difference in the world. I really think every celiac person should be taking them. No, I don't sell them and this is not a sales pitch. I just know how they have helped me and are helping me. I really think that one day soon, my list of foods that I can eat will increase due to the healing action of the enzymes. The ones I use comes from Transformation Enzymes Inc in Houston, Tx. I get them mailed out to me. Anyway, don't get discouraged! Keep trying new things, I know its hard...I have to do it all the time...we just can't give up! But, you sound like a classic person that needs enzymes. I know if you called the company I get mine from they could help you figure out what you need. There are probably other companies that can do that too! Plug along, one step at a time! Hope this helps..

I was gives enzymes but I seem to be unable to keep them down. Did you reject them at first?

Pilgrim South Rookie
Pilgrim South
Posted
I was gives enzymes but I seem to be unable to keep them down. Did you reject them at first?

You might be taking the wrong ones. I went through several different kinds until findin the ones I take now.

lovegrov Collaborator
lovegrov
Posted

Not sure how to help. You obviously have problems other than gluten. Could the skin thing be psoriasis?

richard

Budew Rookie
Budew
Posted
  • Author
Not sure how to help. You obviously have problems other than gluten. Could the skin thing be psoriasis?

richard

Thanks for responding! psoriasis is what I've been told. What do you do to heal?

Budew Rookie
Budew
Posted
  • Author
You might be taking the wrong ones. I went through several different kinds until findin the ones I take now.

How did you figure out where to start?

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

Celiac.com Sponsor (A8-M):


Pilgrim South Rookie
Pilgrim South
Posted
How did you figure out where to start?

Hi, Well, I just posted an answer to your question above, but it isn't here. If it appears twice, please forgive me. I will try to type it again :) When I was desperate, I called Transformation Enzymes in Houston (after trying so many other enzymes it made my head spin). They were so kind to me and as I began pouring out all my health issues they began making suggestions. They know what they are doing. Different deficiencies sprout different health problems. Skin disorders (I am very convinced) come from the guts inability to break down foods we eat. I used to have eczema something terrible. Anyway, the owner of the companies daughter (many years ago) was told she was dying. She began researching and is a brilliant woman. She became a scientist to help others after helping her daughter. Their products have saved my life and I hope you don't think I am trying to sell them. I am not, I do not have any affiliation with the company except taking their products. I just have a heart to help others like I have been helped. You are welcome to e-mail me directly, I hope its alright to put my e-mail address in here and its not against the rules. I put it on my signature and I hope it shows up. I hope this helps and that you just keep taking the next step forward and don't give up! I know its frustrating, I have great days and then terrible days. All I have to do is eat one thing that I shouldn't! Keep looking up! Hope this helps in some small way! Pilgrim

Hi, Well, I just posted an answer to your question above, but it isn't here. If it appears twice, please forgive me. I will try to type it again :) When I was desperate, I called Transformation Enzymes in Houston (after trying so many other enzymes it made my head spin). They were so kind to me and as I began pouring out all my health issues they began making suggestions. They know what they are doing. Different deficiencies sprout different health problems. Skin disorders (I am very convinced) come from the guts inability to break down foods we eat. I used to have eczema something terrible. Anyway, the owner of the companies daughter (many years ago) was told she was dying. She began researching and is a brilliant woman. She became a scientist to help others after helping her daughter. Their products have saved my life and I hope you don't think I am trying to sell them. I am not, I do not have any affiliation with the company except taking their products. I just have a heart to help others like I have been helped. You are welcome to e-mail me directly, I hope its alright to put my e-mail address in here and its not against the rules. I put it on my signature and I hope it shows up. I hope this helps and that you just keep taking the next step forward and don't give up! I know its frustrating, I have great days and then terrible days. All I have to do is eat one thing that I shouldn't! Keep looking up! Hope this helps in some small way! Pilgrim

I realized I forgot something in posting this over after loosing it. I have discovered there are several steps in feeling well after finding out one has celiac. One is eating gluten free. Another is enzymes. Another is probiotic. Another is allergy testing. Another is hormone testing. etc. and etc. Eating gluten for a long time means poisons being in the body for a long time. It messes many things up and we just need to keep looking for those things that will help us feel better and more productive every day.

Budew Rookie
Budew
Posted
  • Author
Hi, Well, I just posted an answer to your question above, but it isn't here. If it appears twice, please forgive me. I will try to type it again :) When I was desperate, I called Transformation Enzymes in Houston (after trying so many other enzymes it made my head spin). They were so kind to me and as I began pouring out all my health issues they began making suggestions. They know what they are doing. Different deficiencies sprout different health problems. Skin disorders (I am very convinced) come from the guts inability to break down foods we eat. I used to have eczema something terrible. Anyway, the owner of the companies daughter (many years ago) was told she was dying. She began researching and is a brilliant woman. She became a scientist to help others after helping her daughter. Their products have saved my life and I hope you don't think I am trying to sell them. I am not, I do not have any affiliation with the company except taking their products. I just have a heart to help others like I have been helped. You are welcome to e-mail me directly, I hope its alright to put my e-mail address in here and its not against the rules. I put it on my signature and I hope it shows up. I hope this helps and that you just keep taking the next step forward and don't give up! I know its frustrating, I have great days and then terrible days. All I have to do is eat one thing that I shouldn't! Keep looking up! Hope this helps in some small way! Pilgrim

I realized I forgot something in posting this over after loosing it. I have discovered there are several steps in feeling well after finding out one has celiac. One is eating gluten free. Another is enzymes. Another is probiotic. Another is allergy testing. Another is hormone testing. etc. and etc. Eating gluten for a long time means poisons being in the body for a long time. It messes many things up and we just need to keep looking for those things that will help us feel better and more productive every day.

Thanks so much. You are a big help. Hope is huge.

I am headed for Texas in March. My nephew is in Houston I will see if I can talk with them.

In the meantime I will try again starting with the probiotic.

I also you make a great point about the hormone testing. My body has been re-adjusting since I stopped depo-privera after 10 years, besides being ravaged by this disease.

Thanks again. BuDEW

Pilgrim South Rookie
Pilgrim South
Posted
Thanks so much. You are a big help. Hope is huge.

I am headed for Texas in March. My nephew is in Houston I will see if I can talk with them.

In the meantime I will try again starting with the probiotic.

I also you make a great point about the hormone testing. My body has been re-adjusting since I stopped depo-privera after 10 years, besides being ravaged by this disease.

Thanks again. BuDEW

You can always call them, I don't have the number right here or I would give it to you. You can also make an apt and they can look at your blood under a dark field and really see a lot of what is happening, plus test some other things. They really can help! We actually go back and forth every few months, as my husband has business there and we still have family there. Hang in there! Pilgrim

Ursa Major Collaborator
Ursa Major
Posted

Hi Budew, and welcome to this board. Have you seen a naturopath? Have you had allergy testing done? Eliminating all animal products doesn't sound like a great idea to me, as you aren't eating anything that contains any protein at all. Your body needs protein, or you'll never get better.

One excellent enzyme is wobenzyme. I'm not sure if you can just go and buy it in the health food store, or if you have to get it through a naturopathic doctor or a homeopath.

My naturopath is treating me for adrenal fatigue. And he says, as I heal, he thinks I will overcome some of my food intolerances (not gluten, of course, he made that clear).

How did you figure out which foods to eliminate? Did you do a true elimination diet?

Anne AMP Apprentice
Anne AMP
Posted

Help! I am down to 97lbs. Docs do nothing. I have diarrhea all the time. Been gluten, egg, soy,dairy,rice, corn free for three weeks but continue to get worse. I eat boiled chicken, boiled beef, baked butternut squash, steamed green beans, baked pear, and baked plum (was eatting steamed chard, think I'll stop). According to the web site the Transform products are olny available to health care professionals. Thanks for your help. Anne

mythreesuns Contributor
mythreesuns
Posted

Do you know if you sleep well?

I have been diagnosed with fibromyalgia, which is belived to some extent be caused by little or no stage 4 sleep. (I think it was also brought on by eating foods I am allergic too, as well) One of the treatments is sleep medication.

Lack of good quality sleep can for sure be contributing to generalized pain, and what's known as trigger points can contribute to congestion.

Just for fun, check out this article on trigger points and see if it helps at all:

Open Original Shared Link

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):



  • Who's Online (See full list)

  • 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.