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SpiralArrow

Member Since 03 Jun 2011
Offline Last Active Oct 26 2011 07:06 AM
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Topics I've Started

Gi And Dietitian

23 September 2011 - 01:38 AM

Hello everyone, I'll apologise now for the length of this post.

Last week I finally got around to seeing a GI and a dietitian and both were useless. The GI insisted quite rudely that because I suffer from constipation rather than diarrhea that this means I don't have Celiac. He mocked any examples I gave him of reactions to certain foods (one for example, being bedridden with pain for 7 days after eating a muffin.) and then told me that a lot of his Celiac patients often "cheat" on their diets and consuming gluten doesn't cause them such severe reactions.

I've recently discovered that I have a terrible problem with eggs and that the egg in the muffin is what probably contributed to the pain I experienced during that example, and I have also been having pain, bloating and cramp-like sensations when I consume fruits or veg high in fructose, or anything sugary that's sweetened with fructose syrup? So those are also possibilities.

I'm willing to accept perhaps I've been mixing up what I thought was "gluten reactions" with some of these other food issues, but removing gluten/wheat from my diet for a month definitely did alleviate a lot of my symptoms. If I don't have full-blown Celiac, maybe I'm a bit wheat intolerant?

Either way, I'm appalled with how the GI assessed my situation. Instead of exploring all of these possible food intolerances, he literally tried to force a diagnosis of Lupus Disease on me. Even though I have NO symptoms whatsoever. Then he tried to blame all of my problems on stress. Then he changed his mind. An argument then nearly broke out when he refused to listen to what I had to say about my BM problems. I have no idea why medical professionals do not seem to care in the slightest that I can't gain weight and that I have LOTS of white "bits" and mucus in my constipated BMs. Surely, that's undigested food?

Anyway, they took stool, urine, and lots of blood samples to check for a long list of things that he didn't bother to explain to me. The only thing he did comment on was that some of the blood tests I had back in June that my GP said were "nothing to worry about", are something to worry about! So I'm having my B12 and folate levels checked. I was also offered a biopsy to test for Celiac if I can do the gluten challenge for 4 weeks. But to be honest, his general attitude about it made me feel like a hypochondriac. I've decided to wait for all of these mystery test results to come back before I decide about going for the biopsy.

After that horrid appointment I was so upset I came home and decided to start eating gluten again, and I've been experimenting with it for the past week with confusing results. For the first two days wheat actually seemed to regulate my BMs and I wasn't having much discomfort, but then I started experiencing constipation that was only relieved (rather painfully) after taking a laxative on Saturday. I continued to eat glutenly food for several days after that, and had no normal bm. In fact yesterday, I started passing mucus, or what looks like undigested fat. Along with that, I've magically started developing cystic acne once again, my abdomen feels very achy and I've lost a further 2 pounds, despite the fact I'm eating more calories. My insomnia and brain fog have also returned in full force.

The dietitian I saw was a nice lady, but just as useless as the GI. Her main goals were to help me gain weight (I'm 5'4'' and can't stay above 96 pounds now) and to regulate my BMs. (BMs that are more regular on a gluten-free diet...) Her advice? Drink a pint of milk a day, and start including WHOLE MEAL bread with my meals. I tried to explain my current issues with possible food intolerances, wheat, and the fact that eggs and fructose-filled foods seem to cause me pain and cramping, and she said nothing. In fact, she told me to start drinking fruit juice again despite the discomfort it causes. I'm supposed to see her again in 6 weeks to see if I can gain weight by eating this way.

I'm actually off to see my GP in a few hours to see if any of my results are back. I wasn't even told how or when I would receive them. Though I'm dreading it because as I said above, she considers most results to be normal even if other professionals don't.

And that's that really. I have a casual GP that never takes any of my medical tests seriously and rarely investigates them, a rude GI who made me feel like a hypochondriac, and a dietitian who wants me to eat gluten. I don't like to be dramatic but I feel really depressed about my life now. I feel as if I'm being treated like an anorexic patient and that the only reason I have problems is because I'm not eating enough. No one seems to understand that I used to eat everything I wanted! I had a very healthy, full diet, but that didn't stop my health from deteriorating the way it has in the past year or so.

My family who were being supportive before are now losing their patience with me and the entire situation. I don't blame them, but I am upset that the majority, including my boyfriend, believe I am clinging to Celiac for no reason. If it isn't Celiac I'm fine with that! I love food, and I'd love to go back to eating whatever I want without issues again, but it's not that simple. I just want to get healthy so I can live my life again. If I drop any more weight I'm scared I'm going to end up in hospital.

Anyway, rant over. I'm sorry it went on a bit.

To sum up: Egg is a definite problem, fructose could be a problem, and wheat/gluten could also still be a problem. I'm anemic and probably deficient in B12 and folate. I can't gain weight, but did gain weight and muscle when I went gluten-free for a month. Does anyone have any advice on what I should do from here?

A month ago if I had known my appointments were going to be this disappointing I would have just gone gluten-free anyway by myself. But the reason I'm relying on medical professionals now is ever since I had this weird incident with eating a muffin that made me very ill for a week, that was when the extreme sensitivity to egg started, along with the pain/cramps from too much fructose. Before that, eggs made me feel a bit sick but I could tolerate it as an ingredient, and I didn't seem to have much of a problem with fructose at all. So naturally I'm a bit concerned with what is going on inside my gut! :(

Thanks for reading.

Mcflurries?

01 September 2011 - 03:37 AM

Hello all. I'm sorry if this overlaps with intolerances to other foods or other boards, if I've posted this in the wrong section feel free to move it mods!

I'm currently undergoing diagnosis for celiac and other food intolerances. I initially had a negative blood test but my reactions to gluten/wheat have become so severe that I can't do the gluten-challenge. So I've been attempting the gluten-free diet for a few weeks now while waiting for some specialist input in September. In the meantime I've been discovering that I seem to have a lot of problems with cross contamination, and other food intolerances. Anyway, I need some guidance with a problem I'm having regarding Mcdonald's Mcflurries. My family has one takeaway night a week, and seeing as I spend the rest of the week eating clean with no snacks or treats, I feel I deserve a little icecream. :lol:

Despite only sticking to Mcflurries that claim to be gluten free and soy free, I seem to always have some kind of reaction to them. Yesterday I ate the Raspberry flake Mcflurry which according to the website, is supposed to be safe to eat. These are the ingredients:

Chocolate Flake Pieces:
Milk, Sugar, Cocoa Butter, Cocoa Mass, Vegetable Fat, Emulsifier (Ammonium Phosphatides), Flavourings

Icecream:
Skimmed Milk, Cream, Sugar, Whey Powder, Glucose Syrup, Stabiliser (Guar Gum, Mono and Diglycerides of Fatty Acids, Nature Identical Flavouring, Carrageenan, Dextrose)

Raspberry Sauce:
Raspberries (45%), Sugar, Glucose Syrup, Water, Thickener (Pectin), Acidulant (Citric Acid)


As soon as I had finished eating I felt irritable, my abdomen swelled up to pregnancy size and my intestines became hard and lumpy. What is causing this reaction? I know the obvious answer is milk, but (fingers crossed) I don't have any issues with milk and dairy normally. I'm fine with milky teas and coffees, cheeses, and icecream is perfectly fine as long as there's no gluten or wheat added. In fact, a glass of milk, cocoa or some gluten free vanilla icecream really helps to settle my stomach if I'm having some issues. I don't know what out of those ingredients could be the cause. Unless there's some sort of contamination with how Mcflurries are made? The only other thing I can think of is sugar content, since the sugar content of Mcflurries is rather high. As a comparision, if the family fancies some KFC instead I usually have a cup of their plain dairy icecream with no toppings, and that has never caused me any problems.

If anyone could offer some input it would be very much appreciated. Dealing with Celiac seemed manageable at first, but now I have begun to realize I could have multiple food intolerances AND that I seem to be highly sensitive to gluten, it has made me feel quite lost and frustrated. I'm reading and trying to learn as much as I can but I always keep making mistakes.

Glutened?

07 August 2011 - 11:57 PM

Hello everyone. Long story short, I have to wait until september to see a GI and in the meantime I have been unsure about whether to keep eating gluten for further testing, or to start gluten free immedietly. I know I've risked ruining my testing by doing this, but I've been trying gluten free for about 3-4 weeks, though I would call it "gluten-light" because I've been making a few little mistakes here and there. But for the most part I was beginning to feel much better. I was sleeping better, my skin cleared up, I was gaining back some muscle and put on a little healthy weight, my BMs were beginning to look more normal, etc. If I did become accidentally glutened, the worst I would experience would be bloating, ratty mood swings and constipation that would last a few days.

Two days ago I began to worry about what would happen if I couldn't get a proper diagnosis, (I already had a blood test that came back negative) so I thought "maybe I'll just eat one item of gluteny food every couple of days now until September." So I decided to have a little chocolate chip muffin.

STUPID IDEA.

My stomach did what I expected, bloated up, and after a while my head began to feel foggy. All familiar sensations so I thought I could handle it. But as the day went on the brain fog became progressively worse and I started to develop strange pains in my abdomen, which was accompanied by nausea. These became so intense that pain relief didn't seem to aleviate any of the discomfort at all, and by the evening even water seemed to be making things worse.

Luckily I was able to sleep through the first night, and I woke up feeling a bit better. The nausea was gone, the only problem I has was my stomach felt as if I had done 1000 situps. But still, I got up and tried to get on with my day, and had a light gluten-free breakfast. But this seemed to trigger off the nausea and the pain again, only this time it was unbearably painful. I spent most of the day doubled over or curled up crying on my bed. There was no position I could get into that helped. And I couldn't stomach water at all.

I got no sleep whatsoever, and now I'm awake on the third day feeling terrible. The only good thing that happened is I've been able to pass some BMs this morning and (sorry if tmi!) apart from them looking the way they usually do when I eat gluten, there is no blood or anything like that. Some of the pain has lessened and I feel slightly more mobile, but I still feel nauseus and am still experiencing pain beneath my belly button. I'm too worried to try and eat or drink anything.

The pain has been so intense I really am scared, I've never had a reaction this bad before. Does this sound like the typical scenario where if someone avoids gluten for a period of time, reactions to gluten will be a lot more severe? Or does it sound like anything else is going on? I'm considering visiting a hospital if I don't feel much better today, I can't handle the pain.

If this is a gluten reaction then I'm definitely NEVER eating gluten ever again and there is no way I'm ever going to do a gluten challenge.
If anyone could offer some advice on how to ease the pain, or just some friendly words I'd appreciate it. :(

What Do I Do Now?

28 June 2011 - 11:57 PM

Hello again everyone, I've been waiting close to three weeks for the results of my antibody test and I finally got them yesterday. They're negative. All I was told over the phone by a different lady is that I'm borderline anemic. I have been eating as gluten free as possible for the past week because my results were taking so long, and to be honest, I've still been having stomach problems. (I suffer from constipation, white bits in stools, pale stools, and mucus which usually seems to lessen if I stop eating glutenly products.) But I'm also currently suffering from my dreaded PMS week which always causes me severe constipation, so I have no idea what to blame!

The only strange improvements I've seen from trying gluten-free this week is my insomnia disappeared after a few days, my brain fog had cleared up dramatically, I'm not as exhausted during the day and my skin texture looks healthier? At this time during the month I usually expect to suffer from bilateral cysts along my jaw line, but after not eating gluten for a a day or so my skin is, well.. it's CLEAR. :lol: And for the most part, my stomach stopped bloating up to the size of a heavily pregnant lady on my gluten free meals. Just a bit sore and worn out I guess. The only times it happened was during times that I think my food was prepared badly. For example, I had some simple soup with a rice bread roll on one day which was completely fine, but I had the same thing a few days later and my step dad prepared it for me. I walked into the kitchen and he was handling the bread roll on a chopping board that was covered with crumbs from a cream pie that he was eating and holding with his other hand!

Though I have a hard time believing that I'm that sensitive to gluten if my results are negative. I feel quite discouraged. :( So discouraged that I gave in last night and had some Dominos Pizza with my boyfriend. And surprise! I bloated up like a balloon and had pains in my abdomen, shortness of breath, insomnia all night and now I've woken up with barely any sleep and I still have shortness of breath.

I have no idea what I'm supposed to do now, or what to discuss with my doctor. What should my next steps be? Is there any point in requesting my results and bringing them here for one of you lovely people to interpret? Should I be requesting any other type of test? Thank you in advance.

Blood Test Advice?

06 June 2011 - 12:21 AM

I'm new here, so hello everyone. :) I have a question regarding blood testing.

I thought I would really have to fight for my doctor to take me seriously because she has a habit of trying to pass off any health problem as a "virus". But as soon as I started describing some of my symptoms (white bits/mucus in stools, brain fog, insomnia, uncomfortable bloating and constipation after eating certain foods, tingling limbs, bruising easily, etc) she suggested food allergies, Celiac Disease being her first thought. So I'm booked in for a blood test next week, but I'm a little bit confused. I asked her whether or not I should carry on eating gluten, or start cutting it out now before the test, and she said I could stop eating gluten and that it wouldn't affect the test results. She then went on the say that it was the "old" testing for Celiac (the biopsy) that was affected if a person was already on a gluten free diet.

Is what my doctor saying true? I was under the impression that starting a gluten free diet before testing did effect results, and that a biopsy would still be needed and is a common modern procedure.

I'm anxious about getting the results as well. The thought of the possibility of losing my favorite foods is upsetting, but I'm actually more worried that I'll get a negative test! If I do have gluten Intolerance, I'd much rather feel fit and healthy by changing my lifestyle and diet than it be something more serious. My doctor said that if gluten isn't the culprit, that it's "probably just IBS." But reading around, I've seen many cases where people who are intolerant of gluten get false negative tests and end up being branded with IBS instead.

I just really hope I can have a clear diagnosis. I'm a 21 year old female who exercises regularly, drinks plenty of water, tries to eat well and takes multivitamins and omega 3. Yet on most days I feel ill, run down and depressed. I opted to carry on eating gluten for now until my blood test, and right now I'm sitting here in a stupor with a swollen tummy, and all I want to do is curl up and go to sleep. All I've eating today is a banana and a bowl of cereal. A few days ago I was feeling so sick I tried going gluten-free for a day or two just out of curiosity, and lo and behold, I actually had energy to get up for the day. My stomach settled down and the following morning I passed a very healthy NORMAL looking stool. (Sorry about that!)

Anyway, thanks for reading, any advice would be appreciated.