Prediagnosis, Gi Appt Next Week

[Marz]

Well I'm basically just trying to get through each day until my appointment next week with a Gastroenterologist.

I saw him a few years ago with generic stomach troubles - nausea, diarrhea, stomach pain and cramps etc. My GP did a blood test for Celiac, unfortunately I didn't get the actual results, just the "Tests were negative" response. He did refer me to this specialist which was great, because it turned out I had a compacted colon. After clearing that out, I felt great for another year or two (Specialist told me to see how I felt, come back if I feel sick again).

Then end of 2009, I had a very bad bout of food poisoning (Just before Christmas! Guess how much fun I had at Christmas lunch picking through my food!), and then a stomach bug that sent me into the emergency room and started a few months of nightly panic attacks. Never been anxious before, worst I got was butterflies before exams/a big show, so the sudden sweats/shivers/heart racing/panic was strange for me . Fortunately I've dealt well with the anxiety, but the stomach problems have been non-stop ever since.

Family history :

My mom was underweight as a child, they were worried that she was anorexic at one stage, and after she had me (3rd child) she ballooned to 80KG and has never been able to lose the weight. She started to have stomach problems a few years ago, and was diagnosed with IBS after colon/endoscopy and blood work didn't pick anything up. She refuses to try giving up wheat, I can't help her My dad has recently had stomach problems as well, and is severely underweight (All his life, but it's really been bad recently). Grandmother had serious stomach issues - chronic appendicitis left her intestines severely injured by the time they found it, and suffered many years with problems. None of my family has any auto-immune diseases or celiac (diagnosed at least). They all believe in wheat for breakfast, meat and bread for lunch/supper diets, so I'm not surprised they all struggled if it's genetic.

I've always been underweight both as a child and as an adult, even though I eat like a horse. With the food poisoning/bug my BMI has dropped to 16% and I can't get it up even though I've tried.

I'm not anemic, thyroid levels are fine etc. I struggle every now and then with tiredness (read exhaustion), muscle pain/cramps and mild depression. Oh and insane PMS, I practically need to lock myself away from other people once a month, lest they annoy me sufficiently to get hurt!

The stomach troubles - daily diarrhea, stomach constantly bloated and unhappy. Occasional severe diarrhea bouts 2-4 hours after a meal, where I've literally just emptied my stomach (Apologies for graphic description folks.) I've been keeping a food diary, and eliminating foods here and there where I thought I might have an "intolerance" but it hasn't seemed to help. I've been "avoiding" pure wheat, because I thought it upset my stomach more than usual, so maybe that's kept me going the past few months.

Last week I decided enough was enough - I'm going to get a proper diagnosis. If it's celiac, I'm just hurting myself doing a wheat-free but not gluten-free diet. If it's not celiac, I can at least try the gluten free diet, knowing that it's probably not going to kill me if I cheat now and then. Furthermore, there's a chance I may be compacted again, in which case diet is going to do bugger-all for me.

I've started eating a bowl of wheat every morning, and bread throughout the day, to try avoid getting a false negative on the blood work - it might have happened the last time I did the test. Boy have I been unhappy

I just find it weird that my stomach problems flared up again after so long feeling ok-ish, after food poisoning/bug and coinciding with the panic attacks. My greatest fear is that I'm just a hypochondriac, and it's all in my head. My poor husband is probably sick of hearing all my new theories. (I've gone from "Chicken allergy" to "onion and garlic intolerance" to "fructose malabsorption" to "wheat intolerant". He's so sympathetic ).

Glad to see such an active and supportive forum!

[Marz]

Well I saw the GI specialist last week. Good news is he didn't feel any impaction this time around, bad news is he'll have to "have a look" to get a proper diagnosis. So 23rd June I'm going for a full endoscopy with biopsy, and colonoscopy - yay!

He gave me some painkillers for the cramping pain, and normacol plus for the constipation/diarrhea. Oh my word, what a mistake that was... I was up all night with terrible nausea. Normacol doesn't agree with me... He asked about my fiber intake, so I'm trying to eat lots of fruit and veges, and of course wheat to try increase the chances of picking celiac up on the biopsy if that's the problem.

He didn't mention blood tests, other than the standard FBC, but I can always go to my GP and ask for this to be done. If he doesn't see anything wrong after the scope and biopsy, and the diagnosis is "IBS", I'll get some blood tests done and do some elimination diets on my own, to see if gluten-free will help anyway.

Main problem at the moment is intermittent nausea... it's like if anything at all is going through my colon (And yes, I can feel it immediately), I get nauseous until it's passed. I really don't think it's stomach related, but who knows?

[Mari]

What you have it seems to me is a type of gastroenteritis - enteric bacteria in the gut who carry toxin producing genes from whatever caused your first episode of diarrhea. Those bad guys may be gone but viruses in your gut can transfer the toxin gene into the normal enteric bacteria - (your Dr may not have read this as it is new research). There are some Drs who treat with antibiotics but not very successfully. You can kill some of these off by taking the common spice turmeric (info online), cinnamon, hot peppers. Taking probiotics or plain yogurt will help by adding back good bacteria to your gut. Finding ways to improve the health of your digestive system - Look at the Forums at CureZone to see what others do.

Fruit and veggies don't have enough fiber. Get an over the counter fiber supplement or just use oat bran - always mixed in with your meals and drink lots of water.

I find drinking strong peppermint or spearmint tea helps with pain and cramping. There have been several posts about PeptoBismo which you can look up.

Make sure he orders specific tests for celiac disease - anti-gladin, anti-tissue transglutaminase and endomysin (sp?)

You may want to look at the Specific Carbohydrate Diet. I have found it very helpful - it's gluten free and helps people with IBS and celiac disease.

I find that I can reduce nausea by sitting up straingt or lying down and pressing my fingers down toward my lower spine firmly but not too hard. Sometimes food gets congested in my esophagus and upper small intestine and that helps pass it down.

[Marz]

Thanks for the reply Mari! I really appreciate the advice - if my GI doesn't sort out the problem, I'll look into what you've mentioned.

[Marz]

Update on my situation, for anyone who's interested :

Went to my very helpful GP a few days ago, because the D attacks were getting pretty nasty. Was also suffering from mild fever and chills/shaking whenever I had d, so I thought I might have a stomach bug on top of things - I'm calling these my "episodes", and they only seem to happen at night (Last night it was at 3AM, great!). During the day I "only" have mild stomach pain and frequent loo breaks.

He's prescribed a heavy antibiotic and 9-strain probiotics, so that should sort out any lingering nasty bacteria. He tentatively diagnosed colitis, my symptoms could even be suggestive of mild ulcerative colitis, though I'm hoping it's not as bad as that.

Can't wait until scopes are done so I can try going gluten free...

[ravenwoodglass]

Update on my situation, for anyone who's interested :

Went to my very helpful GP a few days ago, because the D attacks were getting pretty nasty. Was also suffering from mild fever and chills/shaking whenever I had d, so I thought I might have a stomach bug on top of things - I'm calling these my "episodes", and they only seem to happen at night (Last night it was at 3AM, great!). During the day I "only" have mild stomach pain and frequent loo breaks.

He's prescribed a heavy antibiotic and 9-strain probiotics, so that should sort out any lingering nasty bacteria. He tentatively diagnosed colitis, my symptoms could even be suggestive of mild ulcerative colitis, though I'm hoping it's not as bad as that.

Can't wait until scopes are done so I can try going gluten free...

I hope they are able to figure it out for you soon. I am also glad you are going to do a trial of the diet. It sure couldn't hurt. Do keep on the gluten until those tests are done. Those middle of the night D sessions are awful, as I too well know. Keep us posted on how your doing.

[Skylark]

I just find it weird that my stomach problems flared up again after so long feeling ok-ish, after food poisoning/bug and coinciding with the panic attacks. My greatest fear is that I'm just a hypochondriac, and it's all in my head. My poor husband is probably sick of hearing all my new theories. (I've gone from "Chicken allergy" to "onion and garlic intolerance" to "fructose malabsorption" to "wheat intolerant". He's so sympathetic ).

Glad to see such an active and supportive forum!

Glad to have you here.

You are not crazy! Eating gluten if you're sensitive can cause mental symptoms, including fatigue, depression, and anxiety attacks.

Food poisoning can trigger adult celiac disease, particularly poisoning with Campylobacter jejuni. There's something about the way Campylobacter evades the immune system that can trigger Guillain

[Marz]

You are not crazy! Eating gluten if you're sensitive can cause mental symptoms, including fatigue, depression, and anxiety attacks.

Thanks for the reassurance

Yay - I managed to get my blood test results today! From 2007, when I first started with GI issues, my blood work was normal. Platelets "adequate", Iron normal, RBC normal.

The "Celiac tests" that I thought was done, was actually a "Gluten IgE" test - very thorough. /sarcasm.

With the new blood tests done last week :

- Iron High - a few points above the maximum range.

- Platelet and RBC count normal.

- Leukocyte count low.

- IgE normal, unfortunately IgA wasn't tested.

I suggested Celiac disease to my new GP, and he said that in his opinion it's probably not that, he thinks it's a sensitive stomach (IBS?), and suggested I've probably always had stomach problems as a kid (I haven't, but I didn't say so )

He's given me a few months' prescription for Librax (Which is a combination of anti-anxiety and stomach calming medication). He said scope next week should indicate if there's small intestine damage (Here's hoping the specialist does multiple biopsies).

Going to try going gluten-free after scopes anyway.

[ravenwoodglass]

Thanks for the reassurance

Yay - I managed to get my blood test results today! From 2007, when I first started with GI issues, my blood work was normal. Platelets "adequate", Iron normal, RBC normal.

The "Celiac tests" that I thought was done, was actually a "Gluten IgE" test - very thorough. /sarcasm.

With the new blood tests done last week :

- Iron High - a few points above the maximum range.

- Platelet and RBC count normal.

- Leukocyte count low.

- IgE normal, unfortunately IgA wasn't tested.

I suggested Celiac disease to my new GP, and he said that in his opinion it's probably not that, he thinks it's a sensitive stomach (IBS?), and suggested I've probably always had stomach problems as a kid (I haven't, but I didn't say so )

He's given me a few months' prescription for Librax (Which is a combination of anti-anxiety and stomach calming medication). He said scope next week should indicate if there's small intestine damage (Here's hoping the specialist does multiple biopsies).

Going to try going gluten-free after scopes anyway.

Are you taking iron in supplements? IF you are not you need to find out why that is high. There are some conditions that can cause an elevated level and those should be ruled out. If you are taking supplements with iron get some without and take those. Too much iron can damage organs.

As to the Librax, this is only my opinion, but I was on that med for quite a while and while it did help a bit with symptoms it is also addictive and you will need to taper off it. If you can hold off on that until after the scope and then start the diet and see if it helps, you don't need to wait for the results of the scope, that might be something to consider. IF you do decide to take the Librax be aware that it can make us drowsy and you need to avoid driving or any activities that could be hazardous until you know how you react to the med. If you should get in a car accident while driving on the med you will likely charged with a DWAI.

[Marz]

Are you taking iron in supplements? IF you are not you need to find out why that is high.

Not taking supplements My GP didn't seem concerned, but I'll raise it with the specialist.

As to the Librax, this is only my opinion, but I was on that med for quite a while and while it did help a bit with symptoms it is also addictive and you will need to taper off it.... IF you do decide to take the Librax be aware that it can make us drowsy

Oh dear...thanks for the warning! I'm taking one at night, so hopefully I'll sleep off the worst effect. I haven't noticed too much drowsiness during the day. I'm definitely not going to take it long term - I don't believe in taking meds to control symptoms, I want to get to the root of the problem!

Thanks again for the advise.

[Marz]

Ok, really shouldn't try post results from memory. I was wrong with the Lymphocyte levels - it's IgE that's low.

Results (Normal Range) :

White blood count - 4.70 x 10^9/l (4.0 - 11.0)

Total erythrocyte - 4.51 x 10^12/l (3.8 - 5.8)

Platelet count - 258 x 10^9/l (140-440)

RBC look normal, platelets normal

S-IgE - 2.18 IU/l (10.00 - 150) - noted as low

C-Reactive protein 0.8 ( < 6.0 )

s-Iron - 33.90 umol/l (8.80 - 27.0) - noted as high

s-Ferritin - 85.80 ug/ml (10 - 160)

Iron levels can be incorrect from laboratory error, or dehydration. I had a very bad episode the night before, so possibly I was a bit dehydrated?

I'm worried about the IgE being so low? No IgA level tested unfortunately.

Levels in 2007 were all normal.

[Marz]

As to the Librax, this is only my opinion, but I was on that med for quite a while and while it did help a bit with symptoms it is also addictive

Yeah... the librax wasn't helping for the stomach problems, was still having nocturnal d, cramps and pain. So I stopped taking it last night and only feeling slightly depressed today. To be honest, I don't think it had much effect on me, but then I wasn't really suffering from anxiety. The colofac the GI gave me doesn't really help either.

5 days till scope...

[hercules25]

I contracted Camplabacter about 2 years ago but suffered all the gastric symptoms years before. Does that indicate anything??

My SAccharomyces cervisiea, IgG and IgA is positive but that seems to do more with Chrons. Any help??

[Marz]

Well scope is done, thank goodness. Took the entire day at the hospital waiting for my turn!

Scope showed no ulcers, a bit of inflammation in the stomach. Waiting for biopsy results still. The GI says short of the biopsies showing something different, he feels I have non-ulcerative inflammation of the stomach, caused by slow gastric emptying. Diarrhea caused by irritable colon, ie IBS I guess. Both conditions can be caused by stress, so I guess I'll try reducing stress as well (It ties in with the panic attacks I suppose...).

I'm not going gluten free for now, going to see if I can decrease stress and stay on meds, and see if I notice improvement in symptoms. If not, gluten free I go

See you in a few months time I guess

[ravenwoodglass]

Well scope is done, thank goodness. Took the entire day at the hospital waiting for my turn!

Scope showed no ulcers, a bit of inflammation in the stomach. Waiting for biopsy results still. The GI says short of the biopsies showing something different, he feels I have non-ulcerative inflammation of the stomach, caused by slow gastric emptying. Diarrhea caused by irritable colon, ie IBS I guess. Both conditions can be caused by stress, so I guess I'll try reducing stress as well (It ties in with the panic attacks I suppose...).

I'm not going gluten free for now, going to see if I can decrease stress and stay on meds, and see if I notice improvement in symptoms. If not, gluten free I go

See you in a few months time I guess

This is just my opinion but I think you are going about this backwards. IMHO you should try the diet first not last. For one thing gluten can increase stress levels all by itself through it's action on the brain. On the diet you may find your tolerance for stress increases and not need the meds.

In addition from this "Yeah... the librax wasn't helping for the stomach problems, was still having nocturnal d, cramps and pain" it seems the med really isn't helping anyway. I was also told by my GI that IBS, which is what he has diagnosed you with does not occur at night after we have been asleep.

I do hope you try the diet sooner rather than later.

[Skylark]

I suggested Celiac disease to my new GP, and he said that in his opinion it's probably not that, he thinks it's a sensitive stomach (IBS?), and suggested I've probably always had stomach problems as a kid (I haven't, but I didn't say so )

He's given me a few months' prescription for Librax (Which is a combination of anti-anxiety and stomach calming medication). He said scope next week should indicate if there's small intestine damage (Here's hoping the specialist does multiple biopsies).

Going to try going gluten-free after scopes anyway.

Librax?

IBS? Sensitive stomach?? Librax??? Grrrrr... I get so angry at doctors who have their heads firmly inserted into their anal orifices.

Put away the Librax and go gluten free. I'm willing to bet you feel a lot better after a month or two.

[Marz]

This is just my opinion but I think you are going about this backwards. IMHO you should try the diet first not last.

Thanks Raven, I know that's probably the best for me, but I'm firmly in denial at the moment, hoping that it's not gluten

I really needed someone to tell me this, so thanks for the encouragement to try the diet. I'm going to go shopping this weekend and stock up on veges and non-gluten snacks, so hopefully I can start next week.

[Marz]

IBS? Sensitive stomach?? Librax??? Grrrrr... I get so angry at doctors who have their heads firmly inserted into their anal orifices.

Haha, love the comment.

I was on a liquid diet the past two days for the scope, where I was really sticking to gluten-free yoghurt and custard etc. My stomach was obviously very happy with this. And then yesterday after the scope I had some yummy pizza, and then suffered the whole night from anxiety attacks, which the Librax did nothing to help with. Grrrr....

Like I replied to Ravenwood, I'm really in denial right now, and just need to get some inertia to try going gluten free. I get awesome free lunch at work, so I also have to overcome the temptation to just eat whatever's going at work, and pack my own lunch or pick through their salad.

The plan is to start this Saturday!

[Marz]

And then yesterday after the scope I had some yummy pizza, and then suffered the whole night from anxiety attacks, which the Librax did nothing to help with.

Ahaha, I know what caused the panic attacks. The doctor prescribed me some Maxolon after the scope, it's supposed to assist with nausea and dyspepsia by stimulating the stomach to empty quicker. Apparently a side effect is anxiety and a google search showed some people did report experiencing severe panic attacks. I'll need to keep that in mind in future... >.>

[ravenwoodglass]

Ahaha, I know what caused the panic attacks. The doctor prescribed me some Maxolon after the scope, it's supposed to assist with nausea and dyspepsia by stimulating the stomach to empty quicker. Apparently a side effect is anxiety and a google search showed some people did report experiencing severe panic attacks. I'll need to keep that in mind in future... >.>

Also keep in mind that it could have been the gluten.

[Skylark]

The desire to stay gluten-free comes very naturally when you start feeling better! Remember you can always change your mind. I bet you won't want to, though.