I Can't Take It Anymore - Please Help!
Posted 09 December 2012 - 05:09 AM
Posted 09 December 2012 - 06:07 AM
Despite all, remaining positive!
Posted 09 December 2012 - 06:21 AM
I have been gluten free for 2.5 weeks. I am still waiting on my biopsy results but as of now I am not diagnosed celiac (the blood test was negative) but decided to go gluten free anyways bc I have so many of the associated symptoms. The first week and a half I felt a bit better but the last week my stomach hurts all the time again and my fibromyalgia is out of control. I hurt so badly I can barely move. I'm not functioning at all, my poor husband and kids only know I exist when they come to my room to say hi bc I am in bad almost at the time. I am desperate - what can I do to help feel better? Right now I am tempted to just stop eating solid food altogether but I know I will get too hungry. I am scared I will feel like this forever. And if the celiac test is negative the dr's are basically not going to help me at all (I am in Ontario and you can only get to see anyone but your family dr with a referral). Any ideas are appreciated - I am falling apart.
I am sorry you are in such a state. It is possible you inadvertantly ingested some gluten or are having withdrawl symptoms. Try to stick with unprocessed foods. Meat, eggs, vegetables, fruits, these are easiest to see they are gluten free. Poached eggs go good for me. Put a substantial amound of water in a pan and bring to a boil. Put warm eggs, (these don't stick as bad) into the pot and turn down to medium. Boil about 5 minutes. Eggs are one of my best foods, so that is why I suggested them. After cooking add salt.
It may seem like you are getting worse, but I think actually your body is more able to alert you to its irratation. So, hang in there and try to learn for it. It isn't always an easy road, but heading in the right direction is always best.
Posted 09 December 2012 - 06:26 AM
Posted 09 December 2012 - 06:33 AM
Despite all, remaining positive!
Posted 09 December 2012 - 07:45 AM
I'd agree on keeping food simple. Maybe the sort of comfort food you might have when sick like chicken broth or soup, mashed potatoes, rice noodles. If what you usually have has gluten, ask on the board and someone will suggest an alternative.
2 other things to watch for - check everything you eat for gluten, check your kitchen, you need a new toaster for example,read the 101 thread. The second is to limit the gluten-free replacements you use. They often have ingredients your body is not used to like gums and starches, and can be higher in salt sugar and fat. I was really sick a couple of weeks in and cut down drastically on processed gluten-free foods.
Lots of us here didn't get positive blood tests or biopsies but had enough symptoms to suggest celiac or non celiac gluten Intolerance to give gluten-free a good go (like me!).
Be gentle with yourself. If you have had celiac or ncgi your body will take time to heal.
Come on in and ask as many questions as you like or just rant and moan
I hope things improve soon
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein
Posted 09 December 2012 - 07:36 PM
Posted 09 December 2012 - 07:38 PM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 09 December 2012 - 08:28 PM
Posted 09 December 2012 - 10:56 PM
Posted 10 December 2012 - 10:05 AM
It's hard to believe, but 2.5 weeks is a short time. Remember how long you have been eating gluten stuff.... I am sooooooo sorry you are so ill. I did not see any protein on your list. Do you have any chicken or eggs to eat? Eggs are usually tolerated pretty well--especially poached!
Please take it easy on yourself! You are *not* a horrible parent!!! Just a parent who is ill--and when I am sick I prefer to be in bed too! (I bet your daughter does too, yes?)
But, you cannot give up eating! It takes energy to cook--but once I get some protein in me, I usually feel better! Rice (I would start with white rice) can be tasty too. I do not use any spices--not even salt. I can use some pepper--but not at first! I still stay away from processed foods (i.e. canned soup)...there are many ingredients that we don't know about in many of those cans!
Are you eating milk or dairy? Many people find that they are on the "no list" too... Surprisingly, many (but not all) gluten-free folks find they are able to handle chicken or beef. Some broth can help with naseau. (sp?)
And Julieabove, may also be correct in that you have "caught" a bug--either way, Drink water! Broth Mild protein-eggs?
Keep a list of foods you *can* eat--and make a "safe food list". Mine is right on top of my kitchen counter! Still !!! Just to remind me of the foods I can eat.... Keep talking--Keep eating what you can--And Hang in there...it does get better!!! Hugs to you!
Posted 10 December 2012 - 10:46 AM
There is a chance that this is related to something else. The stress of diagnosis could have kicked another autoimmune attack into gear that is affecting your gut. If you are certain that there is no cross contamination, and it continues, Iwould see your doctor about it; it could be crohns, colitis, or something like a thyroid problem that is affecting you. It could also be low nutrient levels taking their toll on your body now that the inflammation is starting to heal.
I wish you the best. Hope you feel better soon.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012
Celiac.com - Celiac Disease Board Moderator
Posted 11 December 2012 - 12:04 PM
Posted 11 December 2012 - 12:37 PM
Things that might be causing it, and contributing to it:
- Gluten withdrawal. Gluten activates the same part of your brain that opiates do. A large percentage of folks that go gluten-free get withdrawal symptoms.
- Detoxing, which will increase inflammation for a bit.
- You're still eating things that irritate your gut.
I'd highly recommend going on a strict elimination diet. Definitely be careful about cross-contamination.
This is the diet I went on that healed me, and actually cured my fibromyalgia (the suppliment is great too):
Be sure to steam/boil your veggies to help with digestion. And add peppers to the "do not eat" list. Cutting out all nightshades is essential for healing fibromyalgia.
If you want to add foods back in after doing this diet for a couple of months, add one in at a time. Add the pure form of that food, not a processed version. Give a three day reaction time for each, and keep a food diary. And I hate to break it to you, but ALL grains have gluten in them, and a true gluten-free diet cuts them all out, forever. Mainstream medical providers haven't totally caught-up to this one yet, but it's slowly becoming more known.
Paleo recipe sites are great places to find ideas of what to eat.
I hope this was helpful, and that you feel better soon!
Fibromyalgia diagnosis in 2010.
Mild hyperthyroidism diagnosis 2011.
Disc Degeneration diagnosis 2012.
Life long battle with hypoglycemia.
Gluten Free since 2010. On Paleo-type diet since May 2011.
Suffered years of brain fog, back spasms, nausea, and recurring connective tissue pain and injuries. After years of misdiagnosis, I did my own elimination diet and discovered a severe reaction to wheat gluten and casein. After going on a grain free, nightshade free, Paleo-ish diet, my symptoms are nearly gone, and I FINALLY KICKED THE BRAIN FOG!
Cheers to health! <3
Posted 11 December 2012 - 01:45 PM
All I ate today is bananas, applesauce, dry gluten-free Chex, chicken rice soup (checked and it was gluten free) and a fruit popsicle.
Did you say you have PCOS ?
That goes along with insulin resistance. You just ate fruit, fruit, grain, rice & broth, & fruit juice. In other words, sugar sugar starch starch minimal protein sugar.
This type of high glycemic index eating does not work well with this condition. You will need to eat small, high quality meals, 4 to 6 a day, as little processed as possible, of proteins, good fats, vegetable, and then maybe half a serving of fruit, with very limited grain consumption, if at all, at first. Good fats are olive oil, avocado, coconut milk, nuts. Try using coconut milk as a coffee and tea "cream." Eating fats will help you feel full and not hungry, they are a slow burning fuel. If you do eat any grains, or gluten free grain mixtures, they should be the kind that are higher protein and lower glycemic index, such as brown rice instead of white, or quinoa, buckwheat, amaranth, teff, nut flours such as almond meal, bean flours, or something like a Chebe mix made with egg and cheese so it bumps the protein level UP ^. It is possible to bake totally without grains, if that needs to be done, and you can survive quite nicely on almond meal or buckwheat pancakes and flatbreads while figuring out the rest of it.
If you can't stand cooking, get a chicken, whole or cut up, or a large package of chicken thighs or drumsticks, rinse it very well off with water, and put it in the crock pot, and then eat off of that as your lunch meat for the week. You really need the high quality protein earlier in the day- and lay off the sugar ! Try to do eggs, nuts, peanut butter, well drained and rinsed cooked beans, or fish for breakfast protein instead of cereals. Instead of sugared cereals, use a plain, gluten-free corn tortilla if available, or a plain, gluten-free corn chip base. You can also get a little Magic Bullet blender (oh, how I sneered at my spouse when he came home with that thing as a "gift," until I tried it) or a regular blender and put a bunch of vegetables in it with a banana and a few berries, a few ice cubes, and a little bit of water, to make a smoothie, if you can't bear the thought of eating spinach or cucumbers before 6pm.
You also may have more than one sensitivity going on. A small percentage of people react to even gluten free oats the same way as they do to gluten, which means that the products you use should not be made in a facility which grinds and uses oat flour. Other common culprits are soy flour and in the beginning, any dairy with lactose, because the same part of the intestine which gets damaged as it digests gluten also digests milk lactose sugar. So you may wish to either cut dairy entirely for a bit, or just use gluten free yogurt and/or aged cheeses.
Anything that goes into your mouth, including medications, and over the counter vitamins and minerals, must be gluten free. If you are not taking a gluten free vitamin B complex yet, that will help perk you up, along with a calcium/D/magnesium. (both help with food cravings.)
If your doctors have not done so yet, make them test you for thyroid hormone levels and thyroid antibodies, as the hair thinning is another sign of that. One sign of an ovarian cyst is nausea and loss of appetite, so, if this gets worse, you need to really, really complain at them to get their attention on it. One great thing about the gluten free diet is that if this gluten intolerance or celiac is your problem, and you stick with it, you WILL get your hair growing back in.
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