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Had Diagnosis For A While/ Now? Pancreatitis

Lahayle

By Lahayle
in Coping with Celiac Disease

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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

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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.

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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.

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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.

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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.

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Lahayle Newbie
Lahayle
  • Author
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.

>>>>>>>>>>>>>. 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.

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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
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      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
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