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I Can't Take It Anymore - Please Help!
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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.

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Your biopsy still may turn out to be positive, so hang on in there. My blood test came back as a false negative but when I had my biopsy it was positive. It seems like you are going through a 'healing crisis' it can take a while for your body to recover from eating gluten/wheat. Your body will also be detoxing at the moment. It took me a while to start to feel better, and even now I have small hiccups which cause me problems. Cross contamination is a sneaky fellow!

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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.

Diana

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What have you been eating? How many gluteny kisses might you be getting from your loving children? If it is celiac disease, you may need to remove more sources of contamination. I felt great at first just removing bread and cheerios. Then I got more sensitive and had to remove more and more sources of gluten. It took me awhile to learn all the sources, and meanwhile I spent days in bed too. Now I am so much better it is like I have been ageing backwards. I had to watch my processed food intake carefully. It was well worth all the effort. Hang in there and be patient.

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Another point I would like to add, is, with having fibromyalgia it may take longer to recover as you are being attacked from all sides. As a fibro sufferer myself, I know this only too well. It's a good point (made above) about cross contamination from gluteny kisses. It's surprising how many things that surface, the deeper you look into coeliac disease. Don't give up! There's lots of people on here that can help.

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It can be hard at first as your body adjusts to the new diet and you adjust to a different way of living.

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

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Is my body detoxing or something? I am just so sick. I have been in bed all weekend and my youngest (7 year old girl) started crying at bed time tonight because I was sick in bed all weekend and couldn't spend time with them. I feel like a horrible parent and I feel so sick and I don't know what to do. I am making sure I am gluten free, I have my own toaster, I bought gluten free toothpaste...I don't know what to do. All I ate today is bananas, applesauce, dry gluten-free Chex, chicken rice soup (checked and it was gluten free) and a fruit popsicle. My head is killing me, I can't sleep because I feel so sick, I don't know what to do. I can't take this anymore. I feel like I am WORSE since going gluten free.

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That's a whole lot of carbs and next to no fat or protein. Are you perhaps experiencing blood sugar issues?

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That food is only what I ate today. I have been eating very healthy the rest of the time. I've only been eating what I feel I can keep down today because I feel like I am going to throw up constantly. I have polycystic ovarian syndrome so I am very aware of what my body does with blood sugar issues, this is totally different, this is digestive.

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You might also have a virus. There is a stomach flu going around here.

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Hi smplash! Welcome and glad you are here! Keep checking in when you can! It helps to get the constant support and care that this forum gives to all of it's members! :)

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! :rolleyes: You are *not* a horrible parent!!! :D 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?) :D

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! :D

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! :P Broth :P Mild protein-eggs? :P

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!

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My worst week was my second week. The withdrawl migraine was awful and my stomach wasn't much better yet. I really started seeing improvements after the 3rd or 4th week.

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.

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Still feeling so sick today. I've lost over 2 lbs in the past week bc I can barely eat. I have diarrhea and I'm so nauseous and exhausted. Now my hair is starting to fall out. I took a shower and a bunch came out and my bed is covered in hair that is falling out. I haven't been diagnosed celiac so I don't have a dr following me right now (appt Dec 17 but blood test was negative so not expecting much from biopsy).

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I had the same thing happen to me. I was really sick for awhile, and my fibro went nuts too. Don't worry, it's totally normal!

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):

http://drakibagreen....epair-vite-diet

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!

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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 ! :ph34r: 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," :blink: 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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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.

My guess is that you replaced the glutenous foods in your diet with something you have a serious intolerance to. Dairy perhaps. Get a blood test from the dr. that tells you all your allergies. You should also look up fructose malabsorption and fat malabsorption as possibilities.

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    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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