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

Trying To Cope

momto8

By momto8
in Coping with Celiac Disease

Recommended Posts

momto8 Newbie
momto8
Posted

Hello,

I have been trying to stay gluten-free from about November 2004. I was diagnosed with IBS about 20 years ago. As the years have gone on my problems have become worse with food allergies and terrible bowel problems. Severe pain with loose BM. I have noticed several improvements since going gluten-free. I no longer have to run to the potty!!! I have fairly normal BM for the first time in a very long time. Generally no pain with BM. My acne on my neck and upper back and jaw line is gone!! My heart does not feel like it is trying to climb out of my chest anymore after eating! No longer winded, "psoriasis" on my joints is completely gone. I have been officially diagnosed with Psoriatic Arthritis and I have to say my joints feel pretty good now! I do have disk degeneration in my lower back so the diet has not helped in that area. I am 41 and I do worry about that. My periods are much easier to tolerate now. So even though I don't have an official dx I do think I have found the answer. My doctor was thinking Crones but he was also very interested in what I would find out by doing gluten-free. I have not gone back to the doc because my insurance is not that good.

Anyway, I feel like I may not be getting enough vitamins. I have added milk for calcium and potassium. I was getting leg cramps. I eat mainly a low carb diet with some chocolate thrown in! Yum! I keep Heresy's bars in my purse. I eat processed cheese. I don't think they have any gluten in them. If they do I seem to be handling them ok. I do have food allergies that limit my choices. I seem to be intolerant of chicken. Although turkey is fine. I can not have anything mold based so regular cheese is out. But I am wondering about mozzarella cheese? Any one know if that would be ok? I tested allergic to: Corn, oranges, tapioca, mushrooms, perch, hazel nuts (walnuts burn my tongue), apricots, onions, arrowroot......I am an odd person aren't I? I do not tolerate potatoes very well. They make my heart race. Pop corn makes my face swell. Rice gives me terrible tummy cramping.

I am looking for some foods I can actually eat that will fit into this mess that I am in. I have lost 25 pounds since November and I do need to see what foods I can add to stop my weight loss now. But I want to stay feeling good too. Any ideas?

Thanks so much,

Lee Ann (I hope this is in the right forum" :)

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

Celiac.com Sponsor (A8-M):


stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello Lee Ann,

I had a lot of problems with my joints in the past, too. Especially in my hip joints. From time to time I suddenly had a pain shooting down from my hip bone on the side of my leg, that I was in agony. A doctor told me years way before that happened, that my hip joints are too worn out and that I would have a bone "jumping" out of the joint one day. Dugh! That was a hit in the face. In addition to that I also have disk degeneration in my lower back. From time to time I could feel my disks go "plop" in my lower back. And when I moved my hips forward and backward to stretch out my back I heard that "click" from them moving.

Well, since going gluten-free my joint problems are completely gone. They only come back, when I gluten myself accidentaly. Then what I did for my lower back. Sounds stupid as hell, i know, but I started a good workout on my belly muscles to sustain my back. Now that I read your post today, I realized, it must have worked. Because, when I heard about 50 "clicks" a DAY, I now hear maybe 2 a month. But, like always, if it's not bothering you, you mostly don't realize. I forgot completely about it. Well, I did that with the martial arts and gymnastics training. For you I'd try maybe Pilates??? Or that stuff, that they do on this ball (forgot the name)??? But, whatever you do, I'd do it in a group, cause it's more fun...

Your periods are much easier to tolerate now? That's one thing I experienced, too. With me it's that good now, that I sometimes don't even realize, it starts, so I have to put something in beforehand. Sorry, don't want to be disgusting here. It's just so perfect now.

The BM was back normal again with me, too. I don't have skin from somebody in puberty anymore :P . My heart stays in my chest as well. You could take a vitamin supplement, if you're afraid, you don't get enough vitamins. I take the vitamins from Nature Made. They're glutenfree. Now, I don't know, what to tell you with all your other food allergies. And I don't want to give wrong advices. I would have said, try Nutella on a glutenfree bread to gain weight. But now I see, you can't eat hazelnuts either. Hm, that's really difficult. I eat mozzarella cheese from Boar's Head, which is glutenfree. But I don't know, if you can have that with all your other food restrictions. So, hm, no rice, how about spinach? Doesn't it have a lot of iron, too? Hm, I try to keep thinking about your problem throughout the next days and try to find something. I'm sure, all the others in here have very good advices, too.

Hugs, Stef

momto8 Newbie
momto8
Posted
  • Author

Hi Stef,

I have a Stephanie too. She is getting married in less than 6 weeks and we are very busy with wedding plans!

The back and hip cracking problems you mention are too familiar! When I walk I can hear the bones in my hips grinding together. Not a good thing. I started hip pain in my mid 20's. I have never been way over my idea weight so it is not an issue of being too heavy. I thought maybe it was at times but my doctor says that I was not that far over weight. I do need to look into some exercise program to get my back stronger. It is frustrating because you need to exercise to feel good but you don't exercise because you DON"T feel good! It gets to be a circle that never ends.

My most bothersome symptoms have been the painful BM's, periods, and racing heart. I couldn't even go out shopping without know where the potty. It is a real problem when you are out traveling or shopping, Or on "It's a Small World" at Disney land and you are in this boat thinking you are going to pass out or have a major accident right there in the boat!! That really did happen. I ate a hamburger then got on this ride with my family. I was so SICK I was ready to pass out or vomit. It was horrible. I thought I was going to have to jump out into the water to get out of there! But I managed to do the breathing I learned in Lamaze and that helped me make it to the end of the ride. Celiac makes many things very difficult. Now I can get in the car and go without worrying!

My food allergies add to the frustration but I am wondering if they will get better if I take care of this gluten issue. I feel better over all that is for sure. I have been adding little things back in my diet just to see what happens. Nothing gluten though. I seem to be able to handle milk ok. I am happy to know some chocolate can be eaten.

I have found that I need to eat smaller meals throughout the day. I am not sure if everyone is like that or not. I guess one of the things for me is going from a junk food diet to a more healthy diet. It took a while to get used too!

Lee Ann :)

mopsie Newbie
mopsie
Posted

Hello Lee Ann,

I eat mozzarella cheese quite often and do fine on it. If you can't take rice, have you ever tried buckwheat? I eat a lot of buckwheat - I grind it into flour and make wafflesand bread with it, though I do add brown rice and lentil flour. Buckwheat, if you can tolerate it, is very nutritous. Another grain that is easy to digest for celiacs is millet; and there's a new one called teff. I tried making porridge from that and it reminds me of cream of wheat with a nutty flavor.

Hope this helps.

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello Lee Ann,

my hip pain started when I was about 22 years old. The entire symptoms thing started, when I was 21. You're right, it is a real big problem and very hard with pain to first get started with something sportive for your health. I must admit, if I wouldn't have been doing sports all my life, I would have had major problems with that, too. But after a while with martial arts you get a lot of self discipline, even if you have pain, so I was very used to it already. When you can go on without blinking an eye after getting kicked in the face, you master other stuff, too. After a while you just learn to get tougher. My advice for you though is, start doing exercise with a very good friend and somebody that can "pull" you, if you understand what I mean. And somebody that doesn't let an "excuse" count and pushes you real good. I'm pretty positive, that you can DO it. You have the will to get better and that makes you very powerful. You probably don't realize that yourself, but even if you make only the step to get signed up for a class, it's already a big step in the right direction. And with me it's like that, if I pay money for something I'll go the entire way in the end, cause I don't want to put my money down the drain. What helped me also was, to tell friends, that i'm going to do this and that. And because I didn't want to disappoint anybody, if they were asking how all was working out, I did it and did it good at the end. So, if it helps you, tell me, if you signed up for a class. And I expect you to do it then and tell me how it worked out for you, ok?

Good luck, you can do it.

Hugs, Stef

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    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

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      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
      7yo struggling!

      By JForman · Posted

      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
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      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
      Blood results

      By trents · Posted

      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.
×
×
  • Create New...