Sounds a lot like appendix issues - I thought I had some before and when I was reading through your description it sounded like it. Where are you located in Canada? Usually they triage people according to their needs. If you say you're in 100% pain, can't sleep and think it's your appendix then they might prioritize you. Alternatively, you can wait until 4:00am or 5:00am or so and go when no patients are around. I personally wouldn't wait - I wouldn't necessarily associate specific pain with celiac - your pain is where the small intestine meets the large intestine and where the appendix is located. I wouldn't mention celiac if I went back to the ER as they might not be open-minded about other causes. Just my opinion! Hope you're feeling better soon.
Hi - I have FM and it is very common and the amount you can tolerate varies widely.
You should research the low FODMAP diet (Sue Shepperd and Monash University) There's a lot of misinformation out there so the booklet from Monash is the most accurate. It's based on a lot of research and it's been working for me so far.
Glad you're trying to get to the bottom of it. I can say from personal experience that I can turn into the Hulk when I'm feeling sick and constipated and I've often thought how difficult it would be to not be able to express this to the ones I love. It really is a terrible feeling!
You might also wish to look into fructose malabsorption, lactose intolerance, and other intolerances if she doesn't feel better with an entirely gluten-free diet.
Some of us are affected by the amount of carbs eaten at one time. I can only eat 30g of carbs in one sitting 2.5 - 3 hours apart. This should get better with time but at the moment I have to really watch small intestinal bacterial overgrowth (SIBO). You might want to try increasing calories from protein and fat and decreasing carbs.
I also suffer from constipation so taking a lot of probiotics isn't always a great idea if the system isn't moving things through - it will just add more bacteria to the fire. My dietician spoke with a doctor at a conference regarding constipation with SIBO and he recommended taking SISU Dophilus Extra Strength (10 billion cfu's), once daily (I was previously taking 1/2 sachet of VSL#3).
Finally, laxatives are harsh on the system but if you need them then you need them. I'm taking polyethylene glycol (miralax, lax a day, restoralax) and from what I've read it's used for children as well. I think that exlax is a stimulant laxative which isn't really recommended because it affects the signals in the intestines. PEG travels through the system without affecting other parts of the body and gathers water in the intestine. It's also not fermentable by bacteria (like lactulose...please stay away from this one!!!) so it shouldn't cause problems in that regard. I would consult a Dr. though about PEG - I don't want to give you misleading information.
I would basically suggest looking up SIBO and the low FODMAP diet. There's a lot of conflicting information out there but you can get a booklet of the low FODMAP diet from the Monash University website and they're the authorities on it.
You might also look at other reactions with soy, corn etc. etc. but take it one step at a time. She might have to eat very simply for awhile until things stabilize. It can be a process and your situation isn't unique...I wish after I'd eliminated gluten that everything just cleared up but it's slowly getting better and better.
everyone's probably tired of my posts but when it comes to diet I've been through the gamut of options.
I personally think that there's a strong possibility that your daughter may have celiac disease and often times it's difficult to get a firm diagnosis. I personally haven't gotten a 100% diagnosis but the inconvenience of the diet vs the side effects makes it totally worth eliminating gluten.
I've also had to go one step further and go on the low FODMAP diet because I suffer from small intestinal bacterial overgrowth. This diet eliminates/limits foods that are difficult to digest (like carbs) and limits the amount of food for the bacteria. It's similar to the specific carbohydrate diet but I find the low FODMAP diet more appropriate because I have some degree of fructose malabsorption as well.
I understand that some people are also sensitive to food chemicals like amines - I don't seem to have a problem with this (as of yet...).
Anyways, when you mention that her movements are very stinky it stuck out to me because it means that for whatever reason the intestines aren't digesting everything and the bacteria are multiplying and creating the smell (this is just my opinion!). I had this experience and since removing or limiting the appropriate foods I've found that things are a lot less stinky. I'm also taking PEG to keep things moving (so there isn't a build up of bacteria) and this is a non-fermentable laxative. Initially I was taking lactulose and that created a HUGE problem because it was actually feeding the bacteria!!!
When it comes to food sensitivities there are so many options and it can be quite overwhelming - between celiac disease, lactose intolerance, fructose malabsorption, small intestinal bacterial overgrowth and the ever ubiquitous (and often meaningless) IBS. A lot of people with celiac have overlapping sensitivities as well.
Eliminating gluten is a good first start (she must be eating gluten in order to ensure the accuracy of tests) and lactose is a common offender as well.
It's best to take it one step at a time so it's not too much. The fact that she doesn't want to eat carbs may be a good hint that they aren't making her feel well - either because of the gluten or because wheat is fermentable - or both.
Sorry if this is confusing! I hope this helps a bit. If you'd like more info. and links just shoot me a message and I can help out. It's amazing that you're doing the necessary research!
I believe that damage to the intestines can be patchy so in that case I think that some biopsies can turn out negative. If she suffers from other intolerances (as Dixiebell mentioned) then this might contribute to her symptoms as well. This includes fructose malabsorption, lactose intolerance, intolerances to soy, eggs, nuts etc. Some people with celiac disease have refractory celiac disease due to small intestinal bacterial overgrowth. I've been on the low FODMAP diet for this and it's been working really well. It's not gluten-free (I've had to modify it accordingly) but there is enough variety and it eliminates/limits foods that would ferment in your small intestines.
There's also the RAPH elimination diet to test for food chemical sensitivities.
It can get quite complicated and consulting a registered dietician (especially a good one who is familiar with all of this) is useful. It's difficult to start an elimination diet and if you're not getting enough nutrients/calories it's hard on your health.
I can recommend a product that has saved me and has kept some weight on - it's called Vivonex T.E.N. It's pricey and doesn't taste good (I don't use the artificial sweetener that comes with it as these are huge culprits for intestinal distress) but it contains all of the nutrients that you need and is absorbed quickly in the small intestine. I'm sure most people wouldn't be interested in this but desperate times...I just found that losing weight and malnutrition were super hard on my body including bone density and I'm sure in a million ways I've yet to find out.
If you have any questions about the diet I'm on send me an email through my account!
Avocados, bananas, nuts (butters easier to tolerate - almonds healthier than peanuts), lactose-free cheese (not sure if you're lactose-intolerant?), adding safflower oil to things such as a tbsp to zucchini at dinner etc. I've had to stay away from difficult to digest things such as red meat and egg yolks and get most of my calories from protein and fat (can't tolerate a lot of carbs at the moment - mostly eating white rice).
Very healthy grains for celiacs are quinoa and amaranth. If you try to eat more fruit and veggies and dairy products then I don't think you'd be missing out on a lot of nutrients.
Eating 6 smaller meals and getting enough calories at each meal.
Sounds drastic but I calculated how many calories I needed per day in order to gain 1 pound per week (healthy weight gain) and then created a spreadsheet that would just add everything up (also use this as my food journal to detect food intolerances) and the numbers don't lie. I just copy and paste the same layout each day and switch up the foods to see what it equals.
It was all guess work before but I've noticed a clear difference now and feel more in control.
In terms of vitamins - this will also seem drastic (long explanation but I have a damaged colon) but I'm using a product called Vivonex and it's a great supplement that is quickly absorbed by the intestines. 300 cal per serving! Very expensive and tastes like corn starch but it contains all of the vitamins that you would need to survive (if you drank enough). Since it's quickly absorbed you don't get bloating etc. from undigested carbs (due to damaged gut). I have to order it through the pharmacy. I have blood sugar issues and have to drink it slowly over a couple of hours but if you could drink it relatively quickly you'd put on weight no problem.
You may be able to tolerate other drinks like Ensure or Boost if your body can handle the sugars (would avoid sugar-free versions since artificial sugars are difficult to digest)
Hope this helps - I'm had a run in with SIBO and C. Diff. and have had a lot of damage so you may not need such drastic measures!
Glad to hear you've finally got some resolution to your symptoms!
I'm in a similar situation - whether I'm gluten intolerant or have celiac I'm staying away from it altogether. I haven't been able to get a solid diagnosis and my doctors are okay with that. The only thing to watch out for would be celiac disease-related risk factors like checking your bone density and B12 levels. Others could probably advise more on this but if you do some research it's good to be aware of what other tests would be performed if you were officially declared a celiac. It might also be worth getting a biopsy at some point in the future just to make sure you're not accidentally ingesting gluten, however, from the sounds of it it seems like you'd know.