Hala

I have severe pancreatic insufficiency. I've had several stool tests done and they've all come back showing "completely undetectable levels of digestive enzymes". So by the sounds of it my pancreas has basically retired (although I don't seem to have an insulin problem).
I'm prescribed Creon to take with everything I eat, which has lipase, protease and amylase.

The GI doctors I've seen have all said that my EPI is down to my Crohn's disease, and is nothing to do with my Coeliac Disease...but by the looks of things it could be caused by either :S

It's the first in the list of symptoms listed by Coeliac UK:
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I think you should definitely push for blood test and biopsy. But remember, you have to be eating gluten for the tests to be accurate!

Does hypoglycaemia cause night sweats? Most nights I wake up at least once drenched in a cold sweat. I don't think I'm getting too hot because I don't feel hot and I very rarely get too hot (wore jumpers in Africa during the summer). Anyway, it's pretty annoying and gross

  On 5/18/2013 at 3:03 PM, tarnalberry said:

You can't really do a single blood testto check for reactive hypoglycemia. Look it up - its an issue with not just the level of your blood sugar being too low (or high), but rather the characterization of how it changes over time in response to ingesting carbs. In some people, it's also partly the rate of change (how fast or slow the change happens) instead of the magnitude (how big or little). You can check on it with a blood sugar monitor (the finger prick kind), but you need to take many reading (like every 20-30 minutes for two or three hours) after eating a somewhat carb-heavy meal, while tracking your symptoms. And then you need to properly interpret it.

Thank you. I looked up hypoglycemia but a lot of the symptoms seem really severe, I've only been experiencing a few of the milder ones. The monitors look pretty expensive but I'll shop around and see if I can get one cheap.

  On 5/18/2013 at 6:27 PM, Deaminated Marcus said:

Hello Hala,

Do doctors give copies of the test results in the UK?

I once read in my Celiac book and online that there is an association

with pancreatic damage and Celiac.

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"There has been some suggestion wheat plays a role in juvenile diabetes as antibodies to the non-glutinous seed storage glb-1 (a globulin) are implicated in crossreactive autoantigenic antibodies that destroy islet cells in the pancreas.[37]"

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In view of your pancreatic issues can you ask your doctor to send you

to a specialist and don't be shy to ask. It's for you not for her.

If the supplement is high in sugar and you are peeing a lot

that sounds like diabetis so do get tested.

(fasting glucose and A1c, fasting insulin)

With your problems with your pancreas I worry if that sugary supplement is hurting your pancreas.

Can you get more calories from fatty foods like adding olive oil and avocadoes, coconut cream, and cheeze?

For your heart palpitations maybe you could ask for an ECG.  It only takes minutes to do.

Hi Marcus . Unfortunately my body is really awful at digesting fats. I have pancreatic enzymes to take with food but the drinks are specifically fat-free so that I absorb more of them. I hope they're not damaging my pancreas, it's already crap enough . I haven't had the drinks much at all lately, I told the dietitian this and she seemed okay with this.

I don't think I'd be able to get hold of most of the test results because they were done in hospital, rather than at my GP surgery, so they'll be lost in some folder somewhere (that's what seems to happen to all my notes!). I feel like I've bothered the doctors so much and had so many tests done I'm worried I'm annoying them or that they will stop taking me seriously . It doesn't help being aspergic either, because I just can't explain myself properly!

  On 5/18/2013 at 7:02 PM, burdee said:

I don't think that effect is common. HOWEVER, I experienced heart palipitations and mild tachycardia after eating sugar for many years. Then I took an ELISA  (enzyme linked immunosorbent assay) blood test for food allergies.  I had a very high IgG mediated reaction to cane sugar. So i started avoiding cane sugar. i could still eat honey, beet sugar, agave, etc., almost any natural sweetner except cane sugar. The palpitations and tachycardia disappeared ... until I accidentally consumed some cane sugar (e.g. Tylenol or products which changed their ingredients by adding cane sugar).  So you might actually have an allergy (IgG or IgA mediated) to cane sugar.  Try avoiding all sources of cane sugar and see whether your symptoms disappear.  You'll have to carefully read labels. Cane sugar is widely used in processed foods.

Oh dear! I'm glad you found out your allergy so you could start feeling better . Doctors don't offer ELISA tests where I am, did you order yours online? Do the products specifically state cane sugar or is it just listed as glucose? Thanks for the info

  On 5/17/2013 at 7:59 PM, tarnalberry said:

No, unless you get a copy of yr tests and check, there is no reason to assume that they've checked for all of these things. And hypoglycemia is hard to test for on a single test (particularly reactive hypoglycemia, which could match some of those msymtptoms).

Okay, thanks for the info, I didn't realise you could be hypoglycaemic without diabetes. I tried to book a blood test but my surgery's fully-booked for now so I ordered a home glucose urinalysis test to do first. Probably not accurate but I thought I'd check before trying to book an appointment again.

  On 5/18/2013 at 1:53 AM, eers03 said:

I would stop taking the energy drink immediately until discussing the symptoms you mentioned above with your healthcare provider.  If he doesn't seem concerned, I would consider a second opinion on that one.  Energy drinks are not evaluated for safety in relevant clinical trials.  They have no contraindication labeling or drug to drug interaction labeling.  5 Hour has been linked to 13 deaths in the US.  Monster I believe is 11.  There are better ways to get sugar without all of the caffeine that comes with these drinks.

 

Heart irregularities are not something to be unsure of when you are consuming energy drinks.

Hi, sorry I should have made myself clearer. These are medically-prescribed nutritional supplements tailored for disease-induced malnutrition/maldigestion. They can't be bought commercially. By high-energy I meant calorie, they do not have any caffeine and are not fizzy. They contain electrolytes, minerals etc but. to be honest, they seem like dressed-up sugar to me, ha.

I've talked with my dietitian over how crap I've been feeling and how the supplements seem to make things worse but she didn't really comment and I ended up apologising for complaining at her (which I always seem to end up doing!).

And there's absolutely no history of diabetes on either side of my family.

Thanks for the advice everyone.

I've never been tested for diabetes but I've had a lot of blood tests recently so surely they would have picked up diabetes or hypo/hyperglycaemia?

Then again, I am ALWAYS thirsty even though I'm definitely not dehydrated because I pee all the time and it's always clear in colour.

The doctors here are rubbish and it's IMPOSSIBLE to get appointments though :/.

I'm prescribed high-energy supplement drinks (I have complex malabsorption issues and pancreatic failure) which are really sugary.
Anywho, after I have these drinks I quite often feel dizzy/sick and get mild heart palpitations/tachycardia. Even when I sip them really slowly.This happens with sugary food as well.

They're definitely gluten-free so it's not a coeliac reaction.
Is it common for sugar to have this effect on the body? :/

  On 5/11/2013 at 4:45 AM, gatita said:

I know from doing two gluten challenges and several accidental glutenings in the past year that my mileage really varies. Not only was the severity of my reactions quite different, so were the symptoms. I had a mild anaphylactic type reaction one time, and the next, I was terrified that eating pure wheat crackers would kill me, but they didn't. Just had the usual post-gluten stuff a few days later.

 

So in my experience, yes, it varies a lot.

 

And of course, in no way am I recommending experimenting with this for yucks, I just did it under my doc's supervision because we had such a rough time getting a diagnosis.

It'd be interesting to find out what causes the variation! Maybe it depends on the strength of our immune system at the moment of ingestion? Or the region of the intestines targetted?

Yep I would never experiment for 'yucks' . The destruction celiac disease reaped on my body led to me being hospitalised for several weeks on end this year. I'm still recovering from the awful damage and malabsoprtion, no way would I ever purposely make it worse!!! I want to feel better

  On 5/10/2013 at 1:29 AM, Deaminated Marcus said:

Hi Hala,    I wondered the same thing.

 

I had procastinated going back on gluten to do the blood tests for fear of a wave of pain.

But it didn't happen like when I tested it 2 months after going gluten free +2 years ago. 

 

Now I'm consistantly eating bread everyday but the pain isn't consistant so I don't know what is going on.

Hiya . Back when I was eating gluten I didn't have particularly consistent symptoms either, although if I ate a gluten-heavy meal I definitely suffered heavily afterwards! But sometimes I wouldn't feel much of a reaction at all, or would feel crap after a non-gluten meal. Maybe some of the symptoms have time-lags? Or perhaps whilst the antibodies are always present, the symptoms come in waves? Tbh I felt so awful so much of the time I'm not sure the symptoms ever truly subsided!

Good luck with the testing, I hope you can say goodbye to gluten soon

  On 5/10/2013 at 2:02 AM, psawyer said:

This is not an area of celiac knowledge that I have spent a lot of time on, so my thoughts may not be 100% informed. They have, however, guided me through almost thirteen years of being diagnosed with celiac disease and following the gluten-free diet.

Some people with celiac disease do not experience any detectable symptoms, even though there is damage to the villi. These "silent celiacs" never notice a reaction.

Celiac disease is a contest. Gluten causes the immune system to react. The more gluten, the larger the reaction. The reaction produces antibodies. Sensitivity, and therefore production levels, vary from person to person. The tests have limits and are not able to reliably detect antibodies at low levels.

Our bodies want to heal, and the villi slowly regenerate. How quickly this happens varies with many factors. Key ones are that younger people seem to heal faster, and that the more serious the damage originally was, the longer it may take.

So what does that all mean? It seems to me that as long as your healing rate is moving faster than the damage is being done, you are winning the game.

 

But if you want blood tests to be accurate (your insurance will only pay once), don't play around. Eat lots of gluten (a slice or two of regular bread a day) over a period of several weeks prior to testing.

Thanks for the info . I've actually already been diagnosed (very positive blood tests and completely destroyed intestines...the gastroenterologist said they were the worst he'd seen :/) and have been gluten-free for 6 months now, so I don't need to worry about testing or whatnot (which is free in the UK anyway, lucky us!). I was just curious about the science behind the disease.

I just have a few questions re the mechanisms of coeliac disease. I'm a zoology student with coeliac disease (and associated conditions....gluten really reaked havoc on my body!) so am interested in the science, but I've always struggled with  comprehending the biology of the immune system. Maybe it's because mine's so rubbish, ha

Do we ALWAYS react to ingested gluten? Or does it sometimes 'slip through the net'? Obviously most of the time the body does react to glutenings (and boy do we suffer!), but could there be occassional times where the immune system doesn't respond?

ie., are antibodies produced immediately upon every exposure to gluten? And does some level of damage always ensue?

Don't worry, I'm not considering 'cheating' on the diet, I'm just interested in the mechanisms.

.Would it be worth getting my thyroid tested?

Have also been experiencing a twitching thumb and numb fingertips....any ideas? I do have a history of carpel tunnel syndrome but it doesn't usually affect me this way....

Thanks guys . I have talked to the dietitians about possible other intolerances, including lactose, soy, egg etc. but they tell me they're reluctant to have me cut out any foods (I'm a vegetarian) until I'm a higher weight, and I can see their point. I really don't like the supplement drinks at all :/. The liquid feed I get through the tube is really good though, it's specifically tailored to my malabsorption problems and packed full of nutrients etc. .....just wish I didn't have to be on it, ha.

What a lovely topic title, sorry about that!

Over the past year I have lost a lot of weight and am experiencing many 'IBS-like' symptoms. This includes stomach aches, varying food transit times (often very fast), undigested food in stools, blood/blood clots and mucus in stools.
I was diagnosed with coeliac disease (very positive blood test and endoscopy) in November.

Because my weight-loss was so severe, and because I am still not absorbing the food I eat properly, I now have a PEG feeding tube for overnight liquid feeds and am on supplement drinks, alongside a normal (gluten-free) diet.

I have had many tests done, including blood tests, MRI scans, endoscopies and a flexible sigmoidoscopy. My coelaic bloods are now negative (so I am following the gluten-free diet well).
In hospital I was diagnosed with pancreatic insufficiency and have been taking creon enzymes with food.
The flexible sigmoidoscopy showed some internal hemorrhoids which the doctors assume to be the cause of bloody stools.
The doctors tell me I have 'complex malabsorption problems' along with/because of coeliac disease-induced damage and my pancreas not producing digestive enzymes.

However, even with the enzymes and supplements, I am still experiencing large amounts of mucus and blood clots in my stools and any weight gain is painfully slow. I also feel like my stomach is always upset, despite avoiding gluten stringently. Is this to be expected, considering the diagnoses I have been given, or should I push for further investigation? I'm so frustrated and just want to feel better!

Thanks

This might not be in supermarkets where you live but there's probably an equivalent.
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It's really easy as a quick sauce for when you're feeling lazy. Just heat it up with water and vuala, instant dairy-free 'cheese' sauce .
It's got quite a mature taste but I think a 7-year-old would be okay with it. Tastes like real cheese too!

I don't know where you guys live but in the UK Domino's is very coeliac-aware! They use separate screens for the pizzas, which are kept sealed and away from the other pizzas. They don't use any wheat flour on premesis, use separate sauces and utensils and have one dedicated staff member to each pizza.
Then again, I've only had one domino's pizza since going gluten-free and did get quite a bad stomach-ache...although I think that may have been the cheese

  On 2/2/2013 at 10:26 PM, mushroom said:

The complete thyroid panel is seldom run. It consists of the following:

• Hypersensitive thyroid-stimulating hormone (TSH)
  
• free thyroxine (fT4)
  
• free triiodothyronine (fT3)
  
• reverse T3 (rT3)
  
• anti-thyroglobulin antibodies (anti-TG)
  
• anti-thyroid peroxidase antibodies (anti-TPO)
  
• fT4/fT3
  
• fT3/rT3
  

It would be very rare for this to be run in a regular blood panel; normally they just check the TSH, and even for that they often use the wrong range, so unless you have a raging thyroid imbalance, thyroid problems are seldom picked up without the other tests. Your doctor will probably tell you you only need those if your TSH is off, but your doctor, IMHO, would be wrong.

Thanks Mushroom, I suspected as much! My local doctors are awful though, and very financially-constricted. They don't offer allergy/intolerance testing at all and when I asked about thyroid testing they basically shot me down, and said regular blood tests would be adequate. I will go and see my GP on monday to do some begging. I can't live feeling this ill all the time. It's an effort just to walk up stairs. I used to be so very fit and healthy....

  On 2/2/2013 at 6:42 PM, frieze said:

Get tested for hypothyroid.....like, yesterday!

I get regular blood panels and my thyroids are supposedly fine...?

  On 1/31/2013 at 10:40 PM, dilettantesteph said:

This made me mad and upset and then I talked to my daughter. She is young and thin so she is in that demographic anyway. The main reason that she is thin is that she wasn't absorbing her food properly for so long due to undiagnosed celiac disease. Several people have insinuated to her that she has an eating disorder already. The worst about it is that people won't take your needs seriously. Say you are in a restaurant and discussing your needs for careful preparation. Is the server going to take it seriously if they think that you just have an eating disorder? This is irresponsible reporting.

You hit the nail on the head for me there. Coeliac disease has/still is causing me dramatic weight loss and I am currently horribly underweight. I already have to deal with people making judgements when they just walk past me, but when I have to make a big fuss every time I'm discussing food issues with a chef/waiter, I'm wondering whether they're thinking I'm making it all up due to some kind of eating disorder. The state of our lifelong health is in their hands, so if they don't take us seriously due to such preconceptions, it's a huge deal

Thanks for the advice (and don't worry, I love a good long ramble!). I just wish I could see what was going on inside me so I knew exactly what to eat/avoid!!

  On 1/30/2013 at 9:08 PM, rwb9wg said:

Hi there,

I am a 20 year old student at UVA and was diagnosed with Celiac's in September, possibly due to mono which could have affected by immune system and turned on the gene for it (since I had absolutely no issues with it for the first two decades of my life). Since then, I have stopped having gluten, I am sure at first I got it in some ways, but for the past few months I have been extremely careful. However, I am still having a lot of symptoms and I just don't know what to do, my GI says it could be just that it's taking the intestine a long time to heal, but I don't know if anyone else feels like this quite constantly:

-abdomen/flank/back pain especially on the left side (pretty constant pain)

-VERY cloudy head, hard to think

-extreme fatigue/body ache/hard to move around properly (even after lots of sleep)

-seems like my abdomen/flank has narrowed on both sides (outer skin)

I just had a colonoscopy and ultrasound this past weekend which showed everything was normal, although maybe some liquid in my right lung?

If anyone has any ideas of related conditions or anything really, it would be much appreciated! It's hard to go on like this every day which class, especially when I'm trying so hard with the diet!

Thanks a bunch

I don't have any advise for you because I'm experiencing the same thing, I just wanted to let you know you're not alone!

I was diagnosed 11 weeks ago (to this day!) and am in constant discomfort! I feel like I have far more symptoms now than before going gluten-free, although they are different ones and it may be just that I'm more conscious of them....

I have a constantly tender abdomen, occasional chest pain, sharper stomach and back pains, cloudy head, worrying weight-loss, constantly FREEZING COLD body temp, facial swelling, extreme muscle fatigue and lack of energy/momentum, nausea and a narrowed flank on both sides (but could be reduced bloating/weight-loss?) and also GI symptoms. I feel like my insides are really...'raw' all the time and can't deal with anything at all!

I am also a student and have also done all I can to avoid cross-contamination....(which is a challenge when living in a student house with gluten-loving fellow students....I don't think anyone loves cereal and toast as much as these guys!)

I hope we both start feeling better soon. Take some comfort in knowing there's others out there feeling the same way. I also am getting no answers from my doctor besides "recovery takes a long time". None of the doctors round here know anything about celiac disease either...

  On 1/29/2013 at 11:54 AM, Lady Eowyn said:

Hi clsmith

I know how you feel. I too felt great when I first went gluten very light (before I knew about celiac) then gluten free. Giving up gluten didn't trouble me at all because it had made me feel ill for so many years.

Then along came the other problems - really unfair I thought.

Rice, potatoes and soya are real problems now for me along with all processed gluten-free foods - urgh! they make me so ill. Even worse and unlike some here, I have always done a lot of cooking so am happy to produce gluten-free versions of yummy food - in fact, I think gluten free puddings and desserts are better than the gluten versions but wait ........ they make me ill !!!

Sorry, I have taken over your thread with a moan.

Anyway, I view it all as a 'work in progress' and hope that when I have healed enough small amounts of these other foods can be reintroduced again. I also think I am super sensitive celiac and do hold some suspicions about getting cc'd from some gluten free products.

Oh yay, someone else like me!!! After diagnosis I thought having to avoid gluten would be the most difficult part but then all these other intolerances started to raise their ugly heads! Can't tolerate any processed gluten-free products, corn, soya, white potatoes, rice, eggs, lactose and probably tonnes more! Seem to have difficulties with nuts too. Along with being a vegetarian, I feel so limited and I'm feeling so ill most of the time!

How long have you been gluten-free? Are you feeling better yet? I just want to be myself again

I've had problems with tolerating any alcohol since my first coeliac symptoms started to arise....I completely skip the drunk stage and go straight to an awful sick/hangover stage!

Seems like our bodies just can't cope with anything