Half My Pancreas Is Gone B/c Who Knows Why

[ivegotitalso]

Hi All-

I had a bout with bad pancreatitis for two months before i found out i had celiac sprue which my mother, and her mother had before her, in may 10'.

the doctors didnt know what to make of it all b/c all my pancreatic functions and enzymes were normal butfor lipase which was only slightly elevated which sooner returned to normal. what did nott return to normal was my pancreas. upon ct scan with contrast and iv solution, it appears the head of my pancreas was HALF CHEWED UP and verticle in orientation. I am very lucky i am not a diabetic right now. It is half the normal size of a normal pancreas. all the while i am shoving atkins bars in my mouth to try to lose weight. well, the weight came off alright and with it back stabbing pains and horrendus stomach pains which would not go away.

here's the kicker-

i also have sjogrens. which can attack the pancreas also. so which is it from? the gluten crap or the sjogrens.

i dont know and neither does any of the 3 rhuemys i went to looking for answers. the GI says well you got a bad pancky, go to shands in jacksonville, fl for more work up, and if itis from sjogrens, go see your rhuemy. well the rhuemy says, once you got pancreas problems it is out of my hands, go see a GI.

The first GI did a scope on me and told me i was neg for everything including celiac. Then the 2nd GI told me well celiac can happen in patches in your stomach and if the GI didnt hit the right area, then it would come back as neg.

Well who is supposed to beleive what here?

no one wants to help me. not the GI, not the rhuemys. there are only a few of these wherei live to go around and i have already been through 3 of each. now no one wantsto touch me as i am a problem child.

i cant travel to shands, have them shrug their shoulders and walk away the same as these idiots, it is 5 hours away and i have no husband to drive me, i am lucky to get out of bed.

the only one who helped me was my pain mgmt doc who gave me a deprol medrol steriod pak which took the pain down right away, they did an IG4 to see if it is auto immune pan, and it came back normal. so is this from celaic? BEATS THE HELL OUT OF ME FOLKS. i think the docs dont know what they are doing and i am being passed around from one doc to another and none of them know what they are doing. the gI doesnt even want to do a colonscopy on me. i give up.

all i can do is eat no gluten and see if this helps. so far i dont know if i am better from the deprol medrol pak or b/c i am cut out gluten. maybe some of you out there can enlighten me.

[Looking for answers]

Well, I can't be of much help, but I can offer this. Sjogren's and Celiac are closely related, and it's thought that Celiac triggers Sjorgren's and other autoimmune disorders in the system. So, in my opinion, you are going down the right path by eliminating gluten. I recommend that you read Dangerous Grains for insight.

[missy'smom]

I know it can be a bitter pill to swallow when we learn that a major organ in our body is damaged.

I will also encourage you to be stricly gluten-free and consider low carb to ease the workload of the pancreas, if your body can handle it, it will go a long way to preserving your health. There is a strong connection between gluten and autoimmune diabetes. Autoimmune diabetes is usually thought of as type 1, which presents in childhood, or early in life. However there is an autoimmune form called L.A.D.A. that presents later in life - the L. meaning latent A. meaning autoimmiine, D. Diabetes in A. Adults. With both forms of autoimmune diabetes, the pancreas is attacked by the immune system. More and more reports are coming out pointing to gluten as well as other allergens(like casein, the protein in dairy) as the triggers for these attacks.

I come at this pancreas issue from a diabetes standpoint because that's what I live with. The encouragement is that it is possible to maintain healthy blood sugar levels with a pancreas that is only able to secrete a minimal level of insulin. I do, and I know of a number of others, even some T1s. And with myself, I inject no insulin but my test results show a very minimal pancreatic function, others as well, some only small doses of insulin. Our bodies are pretty amazing and even damaged can do alot given the support they need. Take that as encouragement.

[Gemini]

  On 7/13/2010 at 9:07 PM, ivegotitalso said:

Hi All-

I had a bout with bad pancreatitis for two months before i found out i had celiac sprue which my mother, and her mother had before her, in may 10'.

the doctors didnt know what to make of it all b/c all my pancreatic functions and enzymes were normal butfor lipase which was only slightly elevated which sooner returned to normal. what did nott return to normal was my pancreas. upon ct scan with contrast and iv solution, it appears the head of my pancreas was HALF CHEWED UP and verticle in orientation. I am very lucky i am not a diabetic right now. It is half the normal size of a normal pancreas. all the while i am shoving atkins bars in my mouth to try to lose weight. well, the weight came off alright and with it back stabbing pains and horrendus stomach pains which would not go away.

here's the kicker-

i also have sjogrens. which can attack the pancreas also. so which is it from? the gluten crap or the sjogrens.

i dont know and neither does any of the 3 rhuemys i went to looking for answers. the GI says well you got a bad pancky, go to shands in jacksonville, fl for more work up, and if itis from sjogrens, go see your rhuemy. well the rhuemy says, once you got pancreas problems it is out of my hands, go see a GI.

The first GI did a scope on me and told me i was neg for everything including celiac. Then the 2nd GI told me well celiac can happen in patches in your stomach and if the GI didnt hit the right area, then it would come back as neg.

Well who is supposed to beleive what here?

no one wants to help me. not the GI, not the rhuemys. there are only a few of these wherei live to go around and i have already been through 3 of each. now no one wantsto touch me as i am a problem child.

i cant travel to shands, have them shrug their shoulders and walk away the same as these idiots, it is 5 hours away and i have no husband to drive me, i am lucky to get out of bed.

the only one who helped me was my pain mgmt doc who gave me a deprol medrol steriod pak which took the pain down right away, they did an IG4 to see if it is auto immune pan, and it came back normal. so is this from celaic? BEATS THE HELL OUT OF ME FOLKS. i think the docs dont know what they are doing and i am being passed around from one doc to another and none of them know what they are doing. the gI doesnt even want to do a colonscopy on me. i give up.

all i can do is eat no gluten and see if this helps. so far i dont know if i am better from the deprol medrol pak or b/c i am cut out gluten. maybe some of you out there can enlighten me.

I also have Celiac and Sjogren's and I will tell you that your pancreatic problems most likely stem from a combination of both diseases. The longer you go without a diagnosis and gluten-free diet, the more damage is done. I have a total of 4 autoimmune diseases and I am convinced the other 3 might not have happened if I hadn't gone 20 years without a diagnosis. I totally feel your anguish over the run-around you have been getting from these doctors.

What I have learned over 5 years........don't rely totally on the AMA to set you right. They are wonderful if you are having a heart attack or stroke....emergency medicine they do fine with. Not so with chronic disease. Not until the AMA recognizes that food plays a huge roll in the many diseases in this country, will people be truly helped and healed. All they know how to do is medicate and their testing is limited.

Stay strictly gluten-free and do not cheat. Be patient with your recovery because you obviously have damage, like I did, and it can take up to 3 years to feel really good again and gain control of your symptoms. I would suggest seeing an alternative medicine doctor because they do much better at treating chronic disease than the AMA ever could hope to do. I think you need to take pancreatic enzymes to help digest your food. This can help immensely.

I think my pancreas may be slightly off tune because there are certain meats (hard to digest) that I cannot eat. Even after 5 years gluten-free, if I eat lamb, which is a fatty animal, it comes right back up 3-4 hours after ingestion. It comes up looking the way it did when I ate it, meaning my body just cannot break it down....at all. I have started weight training classes and need to eat more protein but I am having a slight problem again with my gut since I started this. It's subtle but my stomach is not as happy as it was before I started porking down all the protein. I think I may need to see my alternative doc for some enzymes to help digest it all. I worry that maybe my Sjogren's is starting to cause some problems but not really sure if it's that or I just cannot eat heavier foods due to my sensitive Celiac gut. I know these diseases are the cause of my issues and have to work with that.

I only use my PCP when I absolutely have to because all she ever wants to do is scope me or do some other crap that is a waste of time. I have done much better seeing an alternative doc who listens to my symptoms and does correlating blood work to check levels. She is big on using diet and natural supplements to ease symptoms and make me better....and she has by leaps and bounds!

I wish you much luck in your quest but please try and find an alternative doc in your area and look into pancreatic enzymes. With a compromised pancreas, you need to take them so you can digest your food and get on with your life.