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

Had Diagnosis For A While/ Now? Pancreatitis

Lahayle

By Lahayle
in Coping with Celiac Disease

Recommended Posts

Lahayle Newbie
Lahayle
Posted

<ahttps://www.celiac.com/uploads/emoticons/default_sad.png alt=':('>

Hi I am new to this group. I was diagnosed with Celiac Disease back in 1999 by a

internist. Since then, I really was not aware of the same symptoms of my Pancreatitis.

I have seen 4 specialist in the Gastro field. I was recently diagnosed with Chronic Pancreatitis.

I am in pain all of the time. I thought I had fibromyalgia. Probably do but the symptoms

of my Celiac Disease is so close to the pancreatitis. I have a fatty pancreas, they want to

place a feeding tube. I am only on a diet consisting of : Boost, and Soy drink with instant

breakfasts. I do try to eat. But, when I do? It causes so much pain. Now? This Doctor

seems to think I need to go to someone else? I have already gone to many doctors, some

told me I was mental. Others' gave me tests. I have had the Niesen Surgery for gerd.

I also do not have a gall bladder. I get complicated migranes with all of this. I am seeing

my Doctor on July 2nd. Since I was hospitalized on this past Sunday stayed until Monday

evening. (not my hospital) Gave a cat scan. Told me I had an obstruction in my lower

intestine. I do not know what to do... I am so tired of being in so much pain.

Does anyone have an opinion of what to tell my Doctor? I do not think He knows I have

Celiac Disease. Well, thanks you. I am really glad I found a support group.

Nice to meet you, Lahayle

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

You do need to make sure that all your doctors know you have celiac. You can have the records from the diagnosing doctor sent to all that you are seeing now.

Are you strict in following the diet? Have you eliminatied gluten from all your meds and supplements? Your pharmacist should be calling for a prescription meds and you can call the companies that make any others.

Have you ever tried eliminating other of the other common things that many of us react to like soy and casien from your diet?

I have had pancreatitis and know how much pain you are in. Mine was brought on by an adverse reaction to a prescription drug. It was brought under control by eating very easy to digest foods and the use of pancreatic enzymes short term. Talk to your doctor about whether those might be something to try.

I do hope you are able to get some relief soon.

ranger Enthusiast
ranger
Posted

I've had acute pancreatitus twice ( 15 years apart) and now doc has dx me with chronic pancreatitus. I don't get it, though, because I eat whatever I want (gluten-free) and never have problems. No D, no pain, no symptoms.

ranger Enthusiast
ranger
Posted

Sorry about that! Any way, dx based on the presence of psuedocysts and a dilated duct. Everyone that I've talked to with this problem is in a lot of pain.

so, do I have it or not? Another reason to not trust docs! I'm so sorry for your pain and hope you find some relief.

greeneyes33 Newbie
greeneyes33
Posted

When I was first diagnosed, it wasn't with celiac disease. They told me I had pancreatitis. My amylase and lipase levels were very elevated. They sent me home and told me to eat a low fat low protein high carb diet.

2 weeks later I went in for an endoscopy and got the diagnosis of celiac disease. To make a long story short.....my first dr was an idiot, but the second dr that I saw told me that amylase and lipase levels can be elevated with celiac disease. It took awhile for my numbers to come back to the normal range, but they did eventually.

I had pain, but not the kind of pain that I've heard is associated with pancreatitis. Its supposed to be horrible.

I wish you luck, it sounds like you are going through a lot.

Lahayle Newbie
Lahayle
Posted
  • Author
You do need to make sure that all your doctors know you have celiac. You can have the records from the diagnosing doctor sent to all that you are seeing now.

Are you strict in following the diet? Have you eliminatied gluten from all your meds and supplements? Your pharmacist should be calling for a prescription meds and you can call the companies that make any others.

Have you ever tried eliminating other of the other common things that many of us react to like soy and casien from your diet?

I have had pancreatitis and know how much pain you are in. Mine was brought on by an adverse reaction to a prescription drug. It was brought under control by eating very easy to digest foods and the use of pancreatic enzymes short term. Talk to your doctor about whether those might be something to try.

I do hope you are able to get some relief soon.

>>>>>>>>>>>>>. I did not know soy drink would hurt me. I am lactose intolerant. So, I drink boost, and was using soy drink to mix with instant breakfast. I must begin to learn more

about celiac disease, and a good url web page to go to for the diet. Thanks so much.

Takala Enthusiast
Takala
Posted

Carnation Instant Breakfast has lactose in it because it has powdered milk in it. Some flavors are now also not gluten free.

Scroll down this thread to my username:

https://www.celiac.com/gluten-free/index.ph...rt=#entry536584

and this one, click on the title if the thread doesn't expand:

https://www.celiac.com/gluten-free/index.ph...rt=#entry507085

here's the Carnation Instant Breakfast FAQ page:

Open Original Shared Link

3. Do CARNATION
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.