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Struggling With Recovery :(


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15 replies to this topic

#1 MissBonnie

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Posted 27 May 2011 - 07:50 PM

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..
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#2 Aussie Farmer

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Posted 27 May 2011 - 08:02 PM

Chin up Bonnie if you are an Aussie or even a Kiwi I know that for us "when the going gets tough > the tough get going " I have been right where you are now as a celiac 9mths now and I remember thinking "COME ON ........3 WEEKS NOW,,,, WHEN WILL this EASE UP" !!! but it did, around that time so hopefully anyday now you will improve, bit by bit to the stage when you will be better than ever before .....yeeeeee haaaaaaa B)


i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..


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#3 Marilyn R

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Posted 27 May 2011 - 08:02 PM

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..


I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#4 MissBonnie

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Posted 27 May 2011 - 08:05 PM

I'm sorry you're feeling so bad, especially when you should be feeling so much better. What are you eating?

Many of us develop other food intolerances, especially to dairy, soy, corn. The protein is similar in structure to gluten and your autoimmune system keeps attacking. I have to avoid quinoa too.

It may help to see an allergist too. Good luck!


yes i know i struggle with corn so i avoid that and ive just started drinking lactose free milk too. i dont know why ive been so sick for so long. it just makes no sense :( ive been at the doctors for an ultrasound because she was worried about my gall bladder but that was fine. its just so much pain..
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#5 Jenniferxgfx

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Posted 27 May 2011 - 08:15 PM

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#6 MissBonnie

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Posted 27 May 2011 - 10:55 PM

Lactose free milk, if from cows, can still be an allergen. You might want to try something nondairy. Almond is tasty.


oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk
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#7 Roda

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Posted 27 May 2011 - 11:05 PM

oh really? i didnt know this... perhaps ill just stop milk all together. i dont know where to get almond milk

You can always make your own almond milk.

Ingredients:
1 1/2 cups almonds
4 cups filtered water
sweetner to taste (optional)

Take almonds put in a bowl and pour boiling water over them. Let them sit for a good 5 minutes or so to blanch them. This will make getting the skins off easier. Drain and remove skins. Place almonds and water in blender and blend for several minutes. Strain almond milk through cheese cloth. I found jelly straining bags at a local hardware store and these work so much better. I do find that I have to squeeze the rest of the liquid out of the almond pulp. Add sweetner to taste. I put a little maple syrup or honey to give it just a subtle hint. Now what to do with all of that almond "pulp" that is left? I keep it and use it in baking where ever it calles for almond meal. Works great and no waste. I usually only make 1/2 a batch at a time.

If you are feeling poorly, you may just try giving up dairy completely since a lot of people don't tolerate it especially in the beginning. After you heal you may be able to reintroduce it.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#8 mushroom

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Posted 28 May 2011 - 01:38 AM

There is almond milk down under. Sometimes they put it with the regular milk, sometimes it is with the boxed long-life milk, sometimes it is in the organic/gluten free section of the store, but it is definitely available. So is rice milk, but don't buy Rice Dream because it is processed with barley and a lot of celiacs react to it. Lactose/dairy is the first thing to eliminate if you are celiac. The other things to try eliminating (one at a time and keep a symptom diary) are soy, corn, eggs, nightshade vegetables (potato, tomato, peppers, eggplant or aubergine.) Unfortunately, allergists really (most of them) don't know a lot about this stuff, they just know how to prick your skin and pur stuff in there amd ,make grandiose predictions besed on what happens then, and know nothing much about what happens when you actuallly eat food. :)
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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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#9 IrishHeart

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Posted 28 May 2011 - 08:37 AM

Three months is just a start to healing, Bonnie! I know how hard it is, but you will feel better in time. I struggled mightily with burning mouth, throat,stomach and awful abdominal pain (the gripping bloaty stuff where you want to cry) the first four months. Sorry to tell you that BUT REMEMBER, EVERYONE IS DIFFERENT and heals at different rates. I thought, Oh NO--what else is wrong with me? This is not working!! I am much older than you are and had more area to heal, no doubt!

Now, things are MUCH better.

I gave up dairy right away as the blunted villi cannot digest lactose and an IgG test said I was severely intolerant to soy (I know many celiacs are!) and so, those are out. I gain ground slowly each week.

There are many ups and downs with healing and the body is trying to "right the ship" so to speak and so, while we WANT TO BE BETTER RIGHT NOW, DARN IT :angry: ---we have to just stay the course.

An allergist will not help you much, I am afraid, unless you are having histamine responses?? Allergies are NOT the same as intolerances. Food intolerances behave in a different way. Do the food diary as Mushroom suggest. It will help you see a pattern.

One thing that helped me with digestion and the abdominal pain (because our systems have imbalances of gut flora) was to use digestive enzymes and probiotics.

Not sure if you use those..but they helped me relieve all that pain immensely!

Just some thoughts and I hope you feel better soon!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#10 MissBonnie

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Posted 28 May 2011 - 07:22 PM

thanks everyone. i know its just the beginning of healing but its so hard to get through each day :(
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#11 GlutenFreeManna

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Posted 28 May 2011 - 07:31 PM

Drop the milk for sure! Some people are so lactose intolerant that they cannot even tolerate "lactose-free milk". It actually has very low amounts of lactose. Some people have trouble with casein instead of lactose--which the lactose free milk will STILL have. There are so many milk alternatives--almond milk, rice milk (just avoid Rice Dream brand), coconut milk, hemp milk...soy milk is a possibility too but I would not choose that one first since soy seems to be the next most common thing that some celiac suffers have to avoid.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#12 MissBonnie

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Posted 29 May 2011 - 05:35 PM

interesting, i will def hunt down some almond milk today! this website has helped me so much thanks everyone!
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#13 MissBonnie

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Posted 29 May 2011 - 08:21 PM

tried rice milk today and loved it! its sweeter than regular milk which is yummy. thanks for getting me on that guys it will more than likely help my tummy as im great with all rice products just not corn and dairy
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#14 Dee777

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Posted 31 May 2011 - 05:31 AM

i was diagnosed 3 months ago now and ive been improving but the past 3 weeks ive spent in bed with severe abdominal pain. i mean i cant even get up to eat or anything. why is this happening? will i ever get better? please tell me some encouranging things im struggling for positivity right now :( im only 22 and my life is passing me by..


Oh, you poor thing :(

I am so sorry you are going through this. Hopefully I can give you some words of comfort! I am not a young thing like you, I am 47 years old. However, I was recently diagnosed with Celiac on January 25 of this year. I went gluten free that very day and never once knowingly put another bite of anything containing gluten in my mouth. However, on or about the 3rd of March, something triggered the godawfullest reaction I have ever had. I suffered from incapacitating diarrhea for a solid eight weeks. I couldn't leave my house unless I allowed myself to become totally dehydrated for fear of having an "accident".

I was losing a pound or more a day. I would take a mouthful of water and it shot right out my other end. I was going for IV fluid therapy and my doctor was at his wit's end with me. I saw a specialist who could not help me. I seriously believed I was going to die. Wow, it was so bad...

I made some wonderful friends in here who suggested several things to me that helped, the most important for me was a very good probiotic. You WILL get better, stick with the gluten free diet. The pain WILL go away, be persistent. It's hard not to be depressed, I know. Sometimes a good cry is what can give us the courage to take a deep breath and lift our chins up and carry on! I am thinking of you, and wishing you well, and do know that it DOES get better, I am proof! I feel ever so much better now, and each time I put a bite of food between my lips I give thanks that I am able to do it lol As my mom is fond of saying (and her mother and HER mother before her) "What doesn't kill us makes us stronger..." (I used to roll my eyes at that saying all the time as a kid growing up but now my kids are going to hear it a lot more coming from me )

Take good care of yourself and get better soon!

Dee
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#15 Korwyn

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Posted 31 May 2011 - 09:25 AM

Bonnie - I too had to drop the dairy. I tested positive for antibodies to the protein in cow's milk but I didn't cut it out right away. After a few weeks of getting better when I went gluten-free I started to decline again. I had to eliminate cow's milk and soy. I can tolerate goat's milk (don't like the taste though) and goat cheese (love the taste!). But coconut milk is one of the best milk substitutes. If you can find organic, unsweetened coconut milk try it in place.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(


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