Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Need Some Support


catie

Recommended Posts

catie Newbie

Hi. My name is Catie and I have celiacs. Now that that is out of the way, I am a new new newbie. Been diagnosed for a whopping 3 weeks. Original symptoms began 14 years ago. I really don't know what to expect in recovery. I am 39 years old.

I have been under the impression that my abdominal pain would cease with the implementation of a completely gluten free diet. Thus far, I have read 2 books on celiacs and perused the internet and several cookbooks. I have been uber careful with handwashing and such. Which leads me to what is bothering me. My tummy still hurts. Bad. Why? I don't understand. Is the pain from past gluten?

I really just need to know that it will get better. It doesn't even have to be 100%. I have been in so much pain for years that my standards are really low. I am hoping to be a dynamo before long!!!

Any thoughts would be encouraging as to the source of the pain, the whys', how to cope, and ultimately WILL IT GO AWAY


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Austin Guy Contributor

You may develop other food intolerances or may already have them. Lactose, soy and eggs are the first to look out for. Keep reading here because there are a lot of people who sound more informed than most of the medical community.

JoshB Apprentice

I've been gluten free for about 9 months now. The first couple months were worse. At this point my stomach issues are 60~70% better. Everything else is the same or worse.

I probably had it for twenty years before diagnosis, which isn't uncommon. Unfortunately long term damage is supposed to take longer to heal, and might possibly not heal. Still, I'm grateful that I don't have to run to the bathroom ten times a day, and my stomach rarely hurts now. Also, I know how important it is to eat properly now to prevent further damage, so that keeps me on the straight and narrow even if I worry that the other issues will never go away.

If you're going through what I did, you feel worse right now. You're exhausted and everything is bruised, and maybe you're a bit depressed. That part does get better. Push through and in another week or two you'll pick up and your muscles won't hurt all the time.

There's a ton of info on the forum here about what you can do and eat to speed along healing time.

ravenwoodglass Mentor

Hi and welcome. Have you deglutened your kitchen? You need to replace your toaster with one dedicated to gluten free only, replace scratched pans and strainers and wooden utensils. Are you eating mostly home cooked naturally gluten free whole foods? That helps also. Make sure you check any med or supplement you take to make sure they are gluten free. Read the whole label on supplements as they can have wheat and barley grass and still say gluten free. Neither is something you want. It can take some time to heal so hang in there and hopefully you will feel better soon.

AVR1962 Collaborator

If your stomach is burning it may be GERD.....I didn't think I had any problems with the typical acid reflux but doc put me on Nexium and I actually had to stay on it for over 5 months while my system healed. Could be too that you may have another intolerance such as dairy. Experiment with that and you may find your answer. I have problems dairy, gluten and high fructose. The other thing I would watch very carefully besides all your package ingredients, is make sure your body is getting the proper nutrients. My body was so depleted of vitamins and minerals that I was having all kinds of weird symptoms. If you find this is a problem, there's lots of info on the Internet about symptoms linked to vitamin defiencies.

cyberprof Enthusiast

Hi. My name is Catie and I have celiacs. Now that that is out of the way, I am a new new newbie. Been diagnosed for a whopping 3 weeks. Original symptoms began 14 years ago. I really don't know what to expect in recovery. I am 39 years old.

I have been under the impression that my abdominal pain would cease with the implementation of a completely gluten free diet. Thus far, I have read 2 books on celiacs and perused the internet and several cookbooks. I have been uber careful with handwashing and such. Which leads me to what is bothering me. My tummy still hurts. Bad. Why? I don't understand. Is the pain from past gluten?

I really just need to know that it will get better. It doesn't even have to be 100%. I have been in so much pain for years that my standards are really low. I am hoping to be a dynamo before long!!!

Any thoughts would be encouraging as to the source of the pain, the whys', how to cope, and ultimately WILL IT GO AWAY

Catie, welcome.

Not to discount the other posters, but three weeks is really early. Don't worry about other things, just keep it simple. Eat whole, natural foods (hamburger, steak, chicken, fish, fresh (cooked) veggies, rice, baked potatoes). Try not to eat replacement foods (gluten free bread, treats etc) just yet -wait until you heal. Cook veggies and fruits as raw may be irritating. Drink lots of water. Don't eat too much fat or processed, frozen meals even if they're gluten-free.

It will get better. The pain may take 2-3 months to go away but it most likely will. Energy will come back. Hang in there!

allergyprone Contributor

hi i'm 18 i was diagnosed a little over 2 years ago, going gluten free takes time when i was first diagnosed i started by taking out all the obvious things like bread but i didn't understand cross contamination and didn't deal with it for a couple months after i had completely eliminated every trace of gluten i could find i still wasn't feeling better so my doctor gave me a medication that reset my body after that i felt great so even if you don't start feeling better imediately over time it gets better and easier

hope that helps a little


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



catie Newbie

Thanks to you all for your replies. It took me a while to find my original post! ahahah.

I don't know what to think. I just want to get thru the next few days, even thru the next meal. It feels like I have entered a new world where what I thought was right is now wrong. Overall, I think I am doing alright.

I am only eating whole foods right now. Fruits, veggies, and meats. Nothing packaged except rice, you know what I mean. I figure that I need to say good bye to the 'old' lifestyle so that I will NEVER go back.

Here's another question. Vitamins. All those natural healing texts tell you to do lots of mega doses of vitamins. I started down that road, mostly researched each tablet, and I am thinking they might be hurting me. Just pain not the big D. Opinions?

Tonight, my friends at church made gluten free cupcakes. I didn't have the heart to give her the 3rd degree since she had gone out of her way to love, honor, and serve me. They were the most delicious thing I had eaten in a 3 weeks. We'll see how much cross-contamination there was tomorrow and maybe then I'll have the nerve to question her more thoroughly.

Blessings to you all, catie

AVR1962 Collaborator

Here's another question. Vitamins. All those natural healing texts tell you to do lots of mega doses of vitamins. I started down that road, mostly researched each tablet, and I am thinking they might be hurting me. Just pain not the big D. Opinions?

Vitamins saved me, in all seriousness. My body was not absorbing nutrients, to the point of bone loss, as I had no idea I had an intolerance and alot of damage had taken place in the process. In my case my body was showing signs of the malabsortion and with every symptoms I found it linked to a vitamin or mineral defiency. When I started taking the extra supplements, and stayed off the glutens, my problems have gone away one by one. The only thing that I have ran into is that because I was eating more avocados and bananas to get more potassium into my body I started having swelling in my feet and these foods can cause that I understand, and that is the sort of thing that can happen when you make changes in your diet by supplementing with more.....you have to find that balance that works and find the nutrients the body needs which is amatter of experimenting with.

Bubba's Mom Enthusiast

I just wanted to add..be sure you eat something before taking the vitamins and suppliments. B vitamins can really upset your tummy if taken on an empty stomach.

Best wishes to you.

catie Newbie

I am having a bad day, bad week, and a bad month. I am so tired of this abdominal pain. Pain is crazy. It works on you for a while, then you worry your tummy is going to hurt, it hurts and then the anxiety makes it hurt worse.

I am trying so hard to be patient. I just keep hoping that the pain will end. I have not eaten even 1 lick of gluten. Cleaned out the kitchen. Everything. Then, I found the latest source. Splenda.

I keep trying to find the good in this. This is what I have got so far: I will never have to eat lowfat or fat free anything again. Now, this will include anything made with fake sweetener again. I've lost 8-10lbs. Wow. Maybe, someday, my tummy will quit hurting. That is the one I am waiting for.

cyberprof Enthusiast

I am having a bad day, bad week, and a bad month. I am so tired of this abdominal pain. Pain is crazy. It works on you for a while, then you worry your tummy is going to hurt, it hurts and then the anxiety makes it hurt worse.

I am trying so hard to be patient. I just keep hoping that the pain will end. I have not eaten even 1 lick of gluten. Cleaned out the kitchen. Everything. Then, I found the latest source. Splenda.

I keep trying to find the good in this. This is what I have got so far: I will never have to eat lowfat or fat free anything again. Now, this will include anything made with fake sweetener again. I've lost 8-10lbs. Wow. Maybe, someday, my tummy will quit hurting. That is the one I am waiting for.

I'm sorry you're still having problems. You don't work in a bakery/restaurant do you? You're not remodeling your house/condo? (Drywall can contain wheat.)

If you've eliminated sources like vitamins, meds, family members/cross-contamination, and processed food, I'd go on a modified elimination diet.

My suggestion: eat just plain rice, plain chicken or turkey, canned pears, sweet potatoes: Only non-iodized salt for seasoning. Eat that for three meals a day for two weeks. See if that helps. I know it's restrictive but if it helps with the pain it will be worth it. If it does, then add in other items one at a time every few days, like salmon, grapes, carrots, avocados. See these instructions (for nursing moms, but the principles are the same). Open Original Shared Link Possible problems could be soy, dairy, nightshades (tomatoes, eggplant, peppers), nuts, eggs - add these last.

Oh, and keep a log of what you eat.

Good luck, I hope this works for you.

pricklypear1971 Community Regular

I'm sorry. Years ago I had acid reflux and NOTHING helped except meditation and visualization. I literally "imagined" the pain moving out of my body through my arms and out my fingers. The brain is a powerful thing.

But definitely try to eat mild, simple foods, drink lots of water, and keep a food log. It should get better.

Sublingual vitamins might be better right now. Solid vitamins used to set me off.

And cross contamination is a real pain - after reading this now I have to get new wooden spoons.

Btw - ALTOIDS have gluten in them, as well as my hair coloring. SOB!!!

T.H. Community Regular

So sorry that it's been so upsetting and difficult for you! It sounds so much like what happened to me. I got sicker going on the gluten-free diet, and was losing weight like mad: 1- 1 1/2 pounds a day for the first few weeks. Starving all the time, miserable. Really, really sympathize, hon!

So, lemme see what I can add that might help, if anything!

First, what happened to me, in a nutshell, in case it helps.

I turned out to have food allergies/intolerances. I kept a food journal, recorded reactions, and tried to find connections. Then was also tested for allergies. These were big gastro problems for me - no hives, just gastro issues. Then there was gluten cc in places I wasn't expecting. Between the two issues, I ate something bad at every meal and was sick every day, ugh.

So, things to look for that are a little odd, but might be worth a gander:

1. Toiletries: lipstick, toothpaste, shampoo that is washing over your lips - needs to be gluten free.

2. You said that you use nothing packaged except rice. Just checking to make sure there's not something you're forgetting. Do you use any salt? Any oil? Any spices? These can be contaminated, whether because of processing (An oil of mine was processed on a line that also processed wheat germ oil) or because you used these with your previous gluten cooking and they now have gluten covering the top, or inside the container. If nothing else, you can drop some of these for a while and see if it helps - although cooking without salt is just no fun. :(

3. What kind of meat do you get? This can get contaminated at the butcher's. There are wheat coatings put on in the morning while other meat is being cut up, and ground meat is often made on grinders that also make sausage with gluten added. Buying meat from another source, like frozen from the slaughterhouse, can cut down on that. Or whole cuts, asking them to get a new one that hasn't been broken out of the package for you. Sometimes you can get larger amounts of meat, that you have to cut up yourself, that are still sealed, if you ask at the butcher's.

4. What brand rice do you use? I am an oat sensitive celiac - about 10-15% of us are - and we have to avoid oat contamination, even gluten-free oats. One of the rice brands we were buying at first (Lundberg) grows oats as its cover crop. A number of other oat sensitive celiacs I know seem to feel ill after eating their rice.

5.For fruits and veggies: do you wash them with soap and water? With the trend to offer 'free cookies' to little children so their moms can grocery shop in peace, sometimes these little gluteny hands are touching the fruits and veggies and dropping them back on the stacks, so we end up with contaminated fruits and veggies. <_<

6. vitamins - I was in the same bag as you - vitamins make me feel awful, although I seem to have issues with the dyes as well as other things. I would definitely call them up to see if they are gluten-free, and if they TEST for gluten. Many will say that they are gluten-free, but they don't actually test to confirm that. I've even asked if they test, and they say 'I'm sure we do,' and it turns out they were wrong. Just an area to be really careful about.

7. Other allergies, intolerances that seem common in celiacs I've known: grains/corn, soy, dairy, nightshades (potato, tomato, eggplant, but not sweet potato). For many of us, when we're living without the old foods, we go straight to potatoes, which would obviously make you feel terrible if you end up having trouble with nightshades, yeah?

8. If nothing is helping, and you're not feeling better, you're welcome to head down the list to the super sensitive forum. Don't know if that is your issue, but there are those of us who react to so little gluten that we have to go to some extreme lengths to avoid it, even on a fruit/veggie/meat diet. If nothing else seems to be working, we're always happy to pass on what works for us. :-)

lucia Enthusiast

I had similar issues when I went gluten-free. It's worth noting that we are about the same age, so we can both assume that our poor guts sustained years of damage before we stopped asking them to deal with a substance that they basically find poisonous. By the time I discovered I was reacting to gluten, an endoscopy showed that my stomach was oozing blood. It's no surprise then that my symptoms eventually got worse when I went off gluten, even as my body was spared the stress of having to deal with this poison. My gut was a mess.

I first made sure I wasn't accidentally ingesting gluten. Then, in addition, I cut out dairy, then corn, then soy. But even this wasn't enough. It got to the point where I would just have a little water and feel terrible digestive cramps. Eventually (on advice from someone here), I turned to the Special Carbohydrate Diet (Open Original Shared Link). I followed the stages scrupulously. I didn't have anything except eggs, chicken, fish, vegetables (but no nightshades), and fruits for 6 months - no grains at all, no alcohol, and no caffeine. I didn't even take pain relievers in order to avoid grains. This diet was extreme, but it worked!

I think the medical industry underestimates how badly gluten can damage those of us who suffer from it. It takes a lot of people on this board a fair amount of time to get better. They have to work hard at it and look at many possibilities for healing even after cutting out gluten. But this is a great place to find support and knowledge and to get better.

catie Newbie

I just bought the SCD off of Amazon. At this point, I'll do anything. Including ALL of the good advice listed above. Thank you all for your help and specifically, the kindness. c

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...