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Tuesday, April 10. 2007

Gastroscopy part II

... and the next thing I remember I was looking at the clock back on the ward which was saying 9:20, and a nurse was telling me to turn over onto my left side to have a bit more sleep.

After another 30-ish minutes peaceful sleep I was wide awake, and slightly disconcerted that I'd completely lost 50 minutes. I honestly couldn't remember a thing after watching the 3rd injection into my IV. Okay, so I'm really pleased about that, as I really wasn't looking forward to a long tube being pushed down my throat into my stomach anyway, but all the same, they could have removed a kidney and I wouldn't have noticed.

Then it was refreshment time. I was given a large cup of orange juice, and 3 digestive biscuits were offered. Now as I was undergoing the gastroscopy for a problem with eating wheat and potential coeliac disease, I thought I should mention that the digestive biscuits were definitely OFF my menu. The nurse didn't flinch and instead got my rucksack out of the locker to get me some wheat free snacks that I had bought with me.

After drinkies and snacks a nurse came over and told me to go to the washroom, so I said that I didn't need to go, she made it clear that I was going whether I wanted to or not. So wheeling my IV drip with me off I went. On my return to the bed the nurse who'd inserted the milkshake straw into the back of my hand removed it, oh that was so nice.

I was allowed to get dressed, then escorted back outside to my husband, to wait for the consultant to see me again.

So, the good news from the consultant was that he couldn't see anything that would possibly be causing me a problem. And there was no evidence of why when I eat I feel every mouthful going down my oesophagus, and why food gets stuck there when I'm eating, needing me to drink water to push it onwards.

He had taken a biopsy for coeliac disease, and the results would take a few days to come through. So really there was nothing he could see that was causing my horrifically violent reactions to the merest speck of wheat.

The next step the consultant suggested was a full abdominal scan to rule out things like gallstones etc. He also gave me a laboratory blood test requisition, so that when I had another attack I was to go immediately to the nearest place that would take my blood, then he might be able to see what's happening to my body when an attack occurs. Bit of a long shot I'm thinking, I've been so careful I haven't had an attack for 8 months, but that has meant avoiding all restaurants completely, and I'm not going to purposely eat some wheat just to recreate the symptoms, because the last time I had wheat I thought I was going to die.

When the biopsy results came back they were negative for coeliac disease. So that's sort of good then, I can still carry on eating my homemade granola and porridge with maple syrup safe in the knowledge that I'm not doing myself any harm.

But it means that things are still completely inconclusive. The doctors are doing all the things they can to try to get to the bottom of my wheat problem. I'm not allergic to wheat, but I can't eat even the merest speck of it without terrible symptoms. And after each attack during the last 18 months the symptoms have been exponentially worse than the previous attack.

I have to see my allergist, Dr Charming himself, in July again. I'm not hopeful though that they will ever find out why I can't eat wheat, why I haven't been able to lose weight even on a calorie restricted diet and lots of sport since the day I had the food poisoning, or why my immune system seems to have gone a bit beserk.

But you know, the thing that is still worrying me the most? That I completely can't remember what happened for 50 minutes of my life during the sedation, mind you it was the best 50 minutes of sleep I've ever had.

Posted by Helen Fletton in wheat blog at 10:25 | Comments (6) | Trackbacks (0)

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I went through the endsoscopy thing about a year after I had odd health problems and after having seen about a billion doctors - they found helicobacter pylori and some drugs cleared this/these although it came back... it was only subsequently and through my own efforts, that I was also led to the wheat solution.

Overall, I was ill three years before finding this food link, however, I too have been diagnosed as not coeliac, which means that (here in UK) I can't get any financial help for these expensive wheat-free foods. It also means there's really no further avenue to explore (according to my doctor) so that I'm still not even really sure what it is that makes me ill.

Therefore, every so often I make a mistake and get ill, especially if I have to work away from home.

Tiring, eh! Anyway, just wanted to say thank you for writing about your experiences, it is really helpful and I empathise with you :-)
#1 Bill on 2007-05-07 04:44 (Reply)
Hi

I've visited your website on and off for the last year since I've been having problems and it's very good. However, I would like to point out something. I have a gluten intollerance or allergy but after getting a negative biopsy - result today - I am certainly not coeliac. It is more common to have gluten intollerance than be coeliac they are not actually the same thing.

Many coeliacs get no symptoms at all because coeliacs is an auto immune disease of the small intestine that causes damage to the villi therefore preventing absorption of nutrients. Many coeliacs do not get typical intolerance or allergy because they are not reacting the same way.
#2 Gillean on 2007-05-30 10:07 (Reply)
I must say -- in my home, we've done some alternative treatments for food allergy / sensitivity, and have made some great progress. Much less invasive than having to have a biopsy of your intestines, and definitely working to help our family members eat food and enjoy it.

While doctors are a very important part of anyone's health care, they are certainly not the only health care alternative. Sometimes, alternative medicine offers much more -- especially when the tests from our western medicine all come back negative or inconclusive.
#3 Monique Attinger on 2007-06-22 12:23 (Reply)
Just out of curiosity - I haven't read your entire site, so I'm sorry if I'm repetitive... Not realted to the wheat, but do you drink soda? If so, do you drink diet soda? Your comments about not being able to lose weight remind me of some things I've read about allergies to artificial sweeteners. I don't know if any of it is legit, but I've read stories of people with similar problems that, when they cut out the artificial sweeteners (switched to water, or juices, etc) the problems with not losing weight (and other symptoms) went away. I've also heard that artificial sweeteners can cause you to continue to crave sweet things. I'm having similar trouble losing weight, but I can't bring myself to give up the diet (caffiene free) sodas. Maybe I'll try it for a month and see if it helps me.
#4 Tracy on 2007-07-23 17:36 (Reply)
That's a good point. I only buy diet sodas, if I buy them at all. I'm not really a fan of carbonated drinks, but I find that in the summer after a long hike I crave a diet pepsi, and I don't particularly even like the stuff. So about 1 diet soda per week in the summer, and 1 per month in the winter.

I might try the no soda idea for a few weeks too to see if it helps.
#4.1 Helen on 2007-07-23 17:51 (Reply)
Thank you for your story... Have you ever read the pH miracle by Dr. Robert Young? I think that book may really really help you with your problems.
#5 Bethany on 2008-01-28 14:08 (Reply)

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