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

Chronic Fatigue Disease+cd

chronic

By chronic
in Coping with Celiac Disease

Recommended Posts

chronic Newbie
chronic
Posted

I have been house bound for more than 10 years and discovered the gluten problem about a year and a half ago. Being Gluten free during this time has relieved some symptoms such as not having diarrhea and my swollen knee is now nearly perfect in size as well as experiencing less pain. However the mouth sores are terrible as is the extreme tiredness. Do any of you also have chronic fatigue syndrom and gluten problems also? Will any of the problems ever go away?

chronic ;)

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

Celiac.com Sponsor (A8-M):


JUDI42MIL Apprentice
JUDI42MIL
Posted

Chronic- I have both plus others :(

I find forcing myself to exercise helps..... And I take lots of cat naps.

tredart Newbie
tredart
Posted

Hi. I've been Glutin Free for 5 years and have also suffered with Chronic Fatigue. It seemed to take two years before my energy slowly began to return, and now I am feeling almost "normal." I've learned to pace myself, giving myself breaks when my body says relax. I watch my stress level. Of course, it's impossible to Avoid Stress. I've learned ways to control my reaction to stress, because for me, stress is a huge trigger for fatigue. Also, moderate exercise helps. I started with short walks and then worked my way up to a couple of miles a day. I've recently started Pilates, which is hard work, but very relaxing. Oh, and watch the caffiene. It's my main addiction, but I find if I drink too much, my fatigue gets worse and I crash.

Basically, keep being glutin free and give it time. Go for short walks, even just around the block is great. Learn proper breathing, which will combat the adrenalin over load from stress. And don't give up hope. It is possible to be well.

:D

cdford Contributor
cdford
Posted

My symptoms "began" in earnest 9 yrs ago with chronic fatigue and multiple rounds of EBV. Then came the fibromyalgia, hypothyroidism, and the neurological problems. Finally, the celiac disease/DH diagnosis came almost two years ago. If I had known then what I know now, I could have done so much to prevent the damage!

The CFS/FMS symptoms will gradually get better. It takes a long time to see real changes. If your damage is significant, it may never go completely away.

The good news is this: if you remain gluten-free long term, you can control the symptoms enough to get back to some semblance of normality. Until this last accidental ingestion, I was driving to my son's ball games again and managing to go shopping a few times. I was actually making it through some days without multiple naps. Even the neurological problems were mediating.

I plan to get back there. Here is what the docs have me doing:

Warm water exercise (I have a hot tub--tax deductible with a doc's note) but soaking in a regular tub then stretching your muscles is more than nothing.

A mix of B vitamins. I take them using an insulin needle twice a week. Makes a world of difference in fatigue levels.

Limit the caffeine.

Do stretching exercises regularly. I cannot do aerobics, but stretching helps.

Try to stay awake during the day if possible and sleep longer at night. "Yeah, right" is what I told them. I am trying anyway.

Hope this helps.

YankeeDB Contributor
YankeeDB
Posted

My energy level didn't improve adequately until I got tested for other food allergies (via York lab online) and eliminated all dairy, yeast, soy, eggs and a few other foods.

I think celiac disease causes a "leaky gut" and while it is healing, problem chemicals are still entering the bloodstream so the immune system is still on overdrive. We all know how the flu and colds have fatigue as a symptom; I think its because of antibodies "instigating" the need for us to rest so they can do their work. Something like that.

Good luck!

mela14 Enthusiast
mela14
Posted

I'm reading the responses to this post and hope that things will get better with time. I am only gluten-free about 3 months and gluten has been sneaking in there regularly.....most of the time in unsuspecting medications. Then it usually sets me back for days. Between the fibro, chronic fatigue, celiac disease, IBS it's very hard to get a good day in. I keep trying and pray that it will pay off in the end for all of us!

There have been times when things seemed like they calm down for a while....hopefully those periods of time will last longer.

I agree with stress mkaing things worse and exercise helping......now to get some balance between the two. I also agree that the celiac disease probably caused a leakiy gut and other food intolerances.

chronic Newbie
chronic
Posted
  • Author

:rolleyes: Thanks to all of you for the informative replies. I am not able to exeercise at this time but do try when symptoms let up a bit. Definitely will get back to hot tubbing again. Really having a downturn again with no defineable reason. By the way the Denver chapter has a glluten free shopping list that is wonderful in that it is a manageable size as easy to use. I have the a ddress if any one is interested. Only $7.

Chronic

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

Celiac.com Sponsor (A8-M):


Maggie1956 Rookie
Maggie1956
Posted

I also have chronic fatigue, fibromyalgia, hypothyroid. I also had a histerectomy three years ago, partly because of endometriosis.

So far, my energy level hasn't changed, but I've only been avoiding gluten for around two months. So it's early days yet. :(

I hope you're feeling better soon.

cdford Contributor
cdford
Posted

Two months, three months, you guys are just getting started. Let your bodies heal. This stuff did not do its damage in a month or two and it won't heal up that quickly.

The information about getting tested for other allergies is really good. I did not see significant changes in my neurological symptoms until I stopped all soy as well. We initially stopped almost everything and went to a bland, simple diet for a few weeks. No dairy, no eggs, little plain spices. Absolutely no pepper unless we milled it ourselves. The allergy testing can get expensive but is also well worth it. You will probably find that over time you react to less and less other than the gluten as your immune system stabilizes.

I know it sounds awful to limit yourself so, but it will cut your healing time significantly and you can get back to a more normal way of eating just sans the gluten and other major allergens. Absolutely NO GLUTEN of any kind. Be far more careful than you think you need to be. Become a fanatic. It will change your life in the long run.

A year or so from now you will not believe the difference in your life.

Go for it. It is worth it.

mela14 Enthusiast
mela14
Posted

Hi Donna,

Thanks for your sincere reply. You are right ...maybe it is too soon. I just get very discouraged when these slip-ups happen and then it sets me back emotionally and physically. I am tired of feeling so poorly but what choice do we have. I will try harder to avoid gluten and become more fanatical as you say. Hopefully things will start to simmer down.

I see that you also have fibro and alot of the same ailments as me. I was recently diagnosed with osteoporosis. I had a 10% bone loss in the hips and spine in the past 2 years since my hysteretomy. I tired actonel but it destroyed my gut. I am finally on estrogen and hope that with time it will help the osteo as I was not given it for 2 years.

As for the other food intolerances...did yours get better with time? or are you sitll avoiding them? I did the York test and it confirmed the food I was reacting to so I am not having them.

If the damage was bad enough do you think doing a biopsy would help even if I've been attempting gluten-free for the past 3 months? I guess it will just serve to rule anything else out? or....maybe it will still show some damage. Not sure but I won't go back on gluten for the test.

What are your thoughts on that?

cdford Contributor
cdford
Posted

Those of us who are celiac disease in my family have been able to very gradually add back many of the things we reacted to initially. We did have to be overly careful for the first few months. Each of us still reacts to some little something but it is different for each person (soy for me, shellfish for my daughter, etc.)

You have to make the decision on the gluten challenge for the test. I have mixed emotions. I did it once and would not do it again. Others need to have that confirmation. Some doctors are frustratingly strong willed about it. There is an entire post going on the issue and the thoughts range dramatically. Carefully consider your situation and your doctor's advice and make a decision that you can live with comfortably.

Life will get better with time. Do what you need to do to allow your body to heal and look forward to that time.

mela14 Enthusiast
mela14
Posted

Hi Donna,

I see that people do have different views on the gluten issue for the biopsy. There is no way I would have gluten for the test! I will do the biopsy anyway next month, after my move, just to rule anything else out. If the damage is still visible then it's an added bonus. If not, I will continue to eat gluten-free. Yesterday was a better day with my gut. It is starting to heal from the gluten slip-ups and I've started to become much more aware and "fanatical" of everything I eat....especially medication which seems to have been the culprit this last time.

I am also not eating dairy, eggs, soy & peanuts. Eating out is a challenge and you never really know how the food is prepared .... even when I order plain foods. Often times they say that is is "fresh" and winds up being loaded wth presevatives..that's the killer. But I am starting to get better with that. Recently while out with my sister and family for lunch, to keep it safe I ordered a sald with olive oil on the side. By the time I got home I was famished! I guess it was better than eating anything bad for me.

So, I guess I just have to give it more time and continue along this path. Thanks for your help. Take care,

Archived

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

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


  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748
    Kris46
    Newest Member
    Kris46
    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...