Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Can't Take It Anymore - Please Help!
0

16 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,699
    • Most Online
      3,093

    Newest Member
    kkreuz
    Joined