Not Getting Better Questions
#1
Posted 18 April 2009 - 09:15 AM
#2
Posted 18 April 2009 - 10:11 AM
It varies, was she ill for a long time before the diagnosis?
Have you changed out your colander, plastic and wooden utensils, etc.?
What is her diet like now, many people when first diagnosed can't handle dairy either and find it helpful to cut that out.
Lyme Disease, Diagnosis October 19, 2006
May 2006 - December 2008 Gluten and Dairy Free
December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.
#3
Posted 18 April 2009 - 10:51 AM
rinne, on Apr 18 2009, 11:11 AM, said:
It varies, was she ill for a long time before the diagnosis?
Have you changed out your colander, plastic and wooden utensils, etc.?
What is her diet like now, many people when first diagnosed can't handle dairy either and find it helpful to cut that out.
She was ill for a long time, possibly 10 years, and finally got so bad a month ago she couldn't work and the doctors finally found this problem after a battery of tests. Knowing the importance of contamination and the like (she works in the school cafeteria and has some students with this) we have been very careful with everything we do. She gave up diary about 4 years ago. That didn't do any good either.
#4
Posted 18 April 2009 - 12:51 PM
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
#5
Posted 18 April 2009 - 01:10 PM
wajo427, on Apr 18 2009, 10:15 AM, said:
Your wife sounds similar to me...I have been gluten-free for 24 days...at first I was hoping for a vast improvement. This site and its members helped me to understand that it is different for everyone...I am now hoping to see more signs of healing within three months, but am prepared to wait longer.
I do feel very strong from crack of dawn to about 3-4pm most days...one day this week I didn't bloat or get severely achy joints until almost 6pm!
Good luck to you both.
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
#6
Posted 19 April 2009 - 07:55 AM
GottaSki, on Apr 18 2009, 02:10 PM, said:
I do feel very strong from crack of dawn to about 3-4pm most days...one day this week I didn't bloat or get severely achy joints until almost 6pm!
Good luck to you both.
I wish that was true for her but she is exactly that from the time see gets up in the morning till she goes to bed at night and sometimes wakes up with it. She can't even make it all the way through a shower with out get so weak and shaky she can't stand up. We have done everything we could to go gluten free but it's hard when you don't see any improvement at all. I was hoping someone could shed some light on the length of time it would take to see improvement.
#7
Posted 19 April 2009 - 09:57 AM
wajo427, on Apr 19 2009, 08:55 AM, said:
Everything I have read on this and other sites is MOST celiacs take at least 3 to 6 months with some healing quicker. Some have a drastic recovery all of a sudden after months of frustration.
I have been surprised out how badly a small amount accidental gluten effected me...I have been sick all day today after adding a small amount of turkey breast from our local deli to my eggs with spinach yesterday morning. It is the only item I wasn't sure of. This is the third time in three weeks I wasn't sure of an ingredient and the third time I've gotten sick very quickly during the daytime hours.
Also, I don't know if this is a factor for your wife, but I can not tolerate heat at all...we live in San Diego and today is gorgeous, just over 80, which makes my symptoms far worse. We ski most weekends during the winter and I have found that if we keep the cabin too warm I get sick.
I am 43 years old, extremely ill for the past year and had mysterious illnesses for years. We have backtracked and know that I was celiac at least for 20+ years, if not my entire life.
Hope this helps...take care.
3/26/09 gluten-free - celiac confirmed from tTG IgA 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improved health for a few months -- then substantial deterioration (maybe one good hour per day for ~17 months)
8/10/11 - Started Elimination Diet for Autoimmune Disease
1/1/12 - Tomato, Pepper, Corn, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Seed, Shellfish and Gluten FREE
* Healthier than ever in my life. Didn't know how sick I really was until I removed all possible food intolerance *
"This is your life, are you who you want to be?" ~switchfoot
#8
Posted 21 April 2009 - 01:45 PM
I do agree that if your wife has been ill for a while it will take more than 3 weeks to heal. I hope the healing starts soon!
If your wife is dairy free, what does she use instead of milk? Does she use rice or soy milk? I know we gave my son Rice Dream rice milk for 2 months before I read on this site that it does have a small amount of gluten in it, even though it says 'Gluten Free.' I did see some progress after he went off that!
Good luck!
#9
Posted 21 April 2009 - 02:51 PM
The reality may be that having been sick for ten years it may take quite a while for her to heal. Once our digestive systems collapses we seem suseptible to other issues like ulcers, parasites, and other problems. Have they checked to see if she has ulcers?
The suggestions regarding vitamins was helpful. I have also used castor oil packs for dealing with the pain and sometimes I have used ice packs. Pure peppermint or spearmint tea is good for a sore stomach too. Finely grated beets with lemon juice and flax oil is helpful for the digestion, I have used it regularly with good success.
I hope she is feeling better soon.
Lyme Disease, Diagnosis October 19, 2006
May 2006 - December 2008 Gluten and Dairy Free
December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.
#10
Posted 22 April 2009 - 04:20 AM
#11
Posted 24 April 2009 - 01:15 PM
#12
Posted 25 April 2009 - 07:28 AM
#13
Posted 25 April 2009 - 05:16 PM
wajo427, on Apr 18 2009, 10:15 AM, said:
We know exactly what you're going through! Hang in there. My son was diagnosed and began his gluten free diet 10 weeks ago. We, too, thought why is he not better during weeks 3, 4, 5, 6, etc. He was getting a little better each week. At week eight we noticed a huge turnaround which has progressed to week 10 of him feeling great.
The best way I found it to be explained was in a book we bought called Celiac Disease, The First Year. It said that by the time you get a diagnosis your body has reached a point of so much damage that you're not digesting anything correctly, not just the gluten. So it takes time during the healing process for your body to get to the point of digesting even gluten free meals without feeling upset. The digestion process is not functioning properly for any food, and it takes time to begin to digest normally again. Hope that helps! I know how frustratin it is to be eating "correctly" and still feeling lousy after you eat. My son has had two weeks now of really feeling like himself again, so I think the healing for him is definitely on the right track.
#14
Posted 25 April 2009 - 05:23 PM
GottaSki, on Apr 18 2009, 02:10 PM, said:
I do feel very strong from crack of dawn to about 3-4pm most days...one day this week I didn't bloat or get severely achy joints until almost 6pm!
Good luck to you both.
24 days is not very long in the grand scheme of things. My son is 10 weeks in and has just seen a significant difference in how he feels in the last two weeks. I think you'll see improvements gradually. Like you said, if you feel better longer on a day than usual, that's improvement. My son also started taking digestive enzymes which I think help him with the digestion process. It takes time to get to the point of healing where you do not feel uncomfortable after eating. You weren't digesting anything properly by the time you were diagnosed, even gluten free, so it takes time to heal enough to begin to digest food properly.
#15
Posted 26 April 2009 - 06:05 AM

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