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Gluten Free For 3 Months And Still Spend Days In Bed From Pain And Nausea


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29 replies to this topic

#1 MissBonnie

 
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Posted 02 June 2011 - 05:58 PM

i was diagnosed end of february and ive been completely gluten free since then. i was in hospital with severe pain and nausea and thats how i found out i was celiac. since then ive been really up and down, but started to get alot better. the past 4 weeks ive been in so much pain. ive barely left bed. could i have cross contaminated? would it last for over 4 weeks? i have just taken dairy out of my diet too and i dont eat corn products either. the soy thing doesnt bother me because nothing ive eaten contains it anyway. i tend to just eat fresh foods. im at a loss as to why a healthy 22 year old like myself has gone through all this pain and why its taking so long to recover. my life is passing me by, ive been sick for a good 8 months now and havent worked for 6. i miss my job, my boyfriend, going out, just being able to do simple things. i cant even plan a holiday right now because i dont know when ill be better. having such a sad day about it all today :(
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#2 crzy lady

 
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Posted 02 June 2011 - 06:35 PM

i was diagnosed end of february and ive been completely gluten free since then. i was in hospital with severe pain and nausea and thats how i found out i was celiac. since then ive been really up and down, but started to get alot better. the past 4 weeks ive been in so much pain. ive barely left bed. could i have cross contaminated? would it last for over 4 weeks? i have just taken dairy out of my diet too and i dont eat corn products either. the soy thing doesnt bother me because nothing ive eaten contains it anyway. i tend to just eat fresh foods. im at a loss as to why a healthy 22 year old like myself has gone through all this pain and why its taking so long to recover. my life is passing me by, ive been sick for a good 8 months now and havent worked for 6. i miss my job, my boyfriend, going out, just being able to do simple things. i cant even plan a holiday right now because i dont know when ill be better. having such a sad day about it all today :(


Were you diagnosed with a blood and tissue biopsy test? Have you had a blood test for pancreatitis?
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#3 MissBonnie

 
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Posted 02 June 2011 - 07:02 PM

ive had every test you can imagine, biopsy, ultrasound, a million different blood tests. theres nothing else wrong with me im perfectly healthy on paper its so frustrating im even a perfect weight
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#4 cyberprof

 
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Posted 02 June 2011 - 07:15 PM

ive had every test you can imagine, biopsy, ultrasound, a million different blood tests. theres nothing else wrong with me im perfectly healthy on paper its so frustrating im even a perfect weight


Can you post a few samples of what you eat day-to-day? Are you in a gluten-free or gluteny household?

I found that after I was diagnosed I had (1) missed some gluten via cross-contamination or medicines/vitamins (2) couldn't eat raw veggies or much fat (3) milk and milk products bothered me; (4) could only eat small meals slowly.

You could try a really simple diet: home-cooked plain white rice; chicken, turkey or beef; green beans, zuchini or squash; applesauce, sweet potatoes. (This also eliminates other main allergens - nuts, egg, milk, soy, corn, tomatoes and other nightshades like white potatoes.) No spices. Use clean/new pan or cook on aluminum foil. Cook from scratch and don't eat processed foods or food cooked by anyone else. Try this for a few days and see if it helps. If it does, then slowly add in new foods.

Hope you feel better soon.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 MissBonnie

 
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Posted 02 June 2011 - 07:20 PM

i cook all my own meals, but yes i live in a house of gluten eaters which is hard. i might try to cut out all processed food and just eat veggies etc for a week
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#6 cyberprof

 
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Posted 02 June 2011 - 07:29 PM

i cook all my own meals, but yes i live in a house of gluten eaters which is hard. i might try to cut out all processed food and just eat veggies etc for a week


Ok, then. Try to cook your food covered either by a lid or foil in the oven or if you use a shared microwave, put a lid or plastic over the food. Don't use a shared toaster. Cook only in metal pots (not shared teflon/non-stick). Don't use a shared cutting board: Cut on a clean plate or on parchment paper.

Does anyone in your house bake with wheat flour? If so, it can stay in the air for 24-36 hours and land on food. If this is the case, avoid the kitchen or wear a germ-mask like doctors wear.

In a shared house, keep your food separate in a dedicated cabinet and refrigerator shelf if possible. Don't use shared mustard, mayonnaise, butter, jam etc. Don't put food on the counter unless you clean first. Don't use plastic utensils or colanders. Plain metal pots should be ok. China dishes and ceramic cooking dishes should be ok unless they have cracks or crevices.

And drop milk/cheese/butter, egg, soy, corn, nuts etc. to be sure. Olive oil or cooking oil should be ok.

All this sounds paranoid but may be what's making you sick.

Do you take any medicines, vitamins, supplements? If so, call the manufacturer and make sure that they're safe.

Check your lipstick/lipgloss and don't kiss your boyfriend unless he brushes his teeth first. Sorry.

Hope this helps! Let us know.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#7 Coolclimates

 
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Posted 02 June 2011 - 07:42 PM

I'm so very sorry to hear this. As a fellow Celiac sufferer who hasn't gotten well in over 1 year since I was diagnosed, I can understand your pain and frustration. Fortunately, I don't have the GI issues that you do. But I have been so tired and having lots of other symptoms. I've tried everything to cut gluten out of my diet, yet my antibodies are as high as when I was diagnosed. I've not been eating out at all and travel, among other things has become difficult. I'm 33 and feel I'm too young to have all these problems...although I'm sure I had Celiac at age 21 (probably much younger, I have a feeling I wasn't diagnosed for at least 15 years or so). Anyway, I really hope that you will feel better soon.
like cyberprof said, I have been trying some of the things listed above since I found out that I am still very sick. Best of luck to you.
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#8 MissBonnie

 
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Posted 02 June 2011 - 07:45 PM

it doesnt sound paranoid, ive literally done all of this. im at wits end :(
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#9 Kim69

 
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Posted 03 June 2011 - 06:27 PM

Hi missbonnie - sorry to say this but it may just take time. I am 1 yr gluten-free and still feel tired, Nauseas, have abdom pain, have afternoon naps, am in bed for 11 plus hours overnight etc
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May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#10 domesticactivist

 
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Posted 03 June 2011 - 11:07 PM

Is there any way you can get some time in a house with no gluten? Would the people you live with be willing to just eat their gluten somewhere else? My son got continually cross-contaminated even though we were really careful until we deep cleaned everything, replaced mixers (and the like), replaced pots, reseasoned pans and stopped eating anything processed and stopped eating all grains and most forms of sugar...
I hope you feel better soon!
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#11 mushroom

 
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Posted 04 June 2011 - 12:41 AM

I cannot imagine living in a house that had gluten in it :o I was so paranoid last week when we hosted someone who was rebuilding our soapstone fireplace and I bought him some good "European style" bread because he has iived in Germany most of his life and I wanted to keep him happy. I actually toasted one slice of it in my toaster and agonized over it :blink: He didn't really notice gluten free apart from the bread because I found a German butcher and bought him plenty of wurst and sauerkraut and made him red cabbage :D . Blut if I had to live with the knowledge of gluten in my house every day I think I would go nutz :wacko: Just saying.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#12 GlutenFreeManna

 
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Posted 04 June 2011 - 03:29 AM

It may just take time. My fatigue was not significantly improved for 6 months. My neurological symptoms got gradually better. However if you are having stomach aches I think it's time to examine what your are eating. Are you eating a lot of raw veggies? or a lot of night shades? Or a lot of high fructous fruits? Have you tried new foods that may be giving your trouble? I got very, very bad stomach pain and other GI symptoms from quinoa. I had trouble digesting beans and nuts for the first six months. Actually, I still cannot do black beans. I was able to add other types of beans after one year gluten-free/DF/SF. If you can give us a general idea of what a typical day's worth of food is for you we may be able to suggest some problem foods. You can also try keeping a food and symptoms journal and see if you notice a pattern in when you get sick.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#13 dilettantesteph

 
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Posted 04 June 2011 - 03:53 AM

Is there baking done at your house? You may react to airborne flour. I do. You may need to move, get your family to change their habits, or keep far from the kitchen. You could create your own kitchen in your room with a dorm fridge and microwave.
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#14 MissBonnie

 
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Posted 04 June 2011 - 05:18 PM

i have all my own utensils, pots, pans, everything. there isnt any baking done apart from gluten free. i have my own cereal that is gluten free, i eats eggs, fruit, chicken, tuna, rice cakes, rice, veggies. not alot of sugar or other bad foods. i dont drink coffee either. i just cant see where im going wrong. maybe im just taking a long time to heal? im working with a dietitian at the moment too
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#15 MissBonnie

 
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Posted 04 June 2011 - 05:19 PM

Hi missbonnie - sorry to say this but it may just take time. I am 1 yr gluten-free and still feel tired, Nauseas, have abdom pain, have afternoon naps, am in bed for 11 plus hours overnight etc


are you able to work like this? i am unable to work for the past 6 months
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