Not Getting Better

[wajo427]

My wife was diagnosed with celiac about a month ago. We immediately went glutin free with everything but she doesn't seem to be getting any better. She has been glutin free for about 3 weeks. How long does it take to start seeing some improvement?

[rinne]

Hi.

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.

[wajo427]

Hi.

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.

[GFinDC]

The time it takes to heal seems to vary quite a bit. It might help to consider some vitamin supplements like, A, D, E, and K. plus liquid B-12 (sublingual). If she has intestinal damage she is probably not absorbing her vitamins well. Some people add more protein to their diets after going gluten-free also. Some people say that glutamine may help in healing, but I don't know if that is right or not. Turmeric (the spice) may help with inflammation. A digestive enzyme pill may help also as some enzymes are produced in the intestinal lining, which may not happen if it is damaged.

[GottaSki]

My wife was diagnosed with celiac about a month ago. We immediately went glutin free with everything but she doesn't seem to be getting any better. She has been glutin free for about 3 weeks. How long does it take to start seeing some improvement?

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.

[wajo427]

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.

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.

[GottaSki]

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.

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.

[mstroud]

I'm very sorry to hear that your wife is not getting better. I'm not sure I have any helpful thoughts, but have feel for you as my son is having a much slower recovery than we thought. He's better in some respects, but still has daily abdominal pain. He's 8 and has been gluten free for 11 months.

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!

[rinne]

I was in severe pain for a long time after going gluten free and dairy free, I finally realized that the simplest diet worked best for me and I cut out all grains and processed foods, I also added probiotics to my diet.

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.

[dilettantesteph]

You might see a faster recovery if you stick to naturally gluten free foods at first such as vegetables, meats and fruits. You can add gluten free foods later when she will be able to tell which ones she can tolerate. Not all are tolerated by all celiacs. You also need to watch for accidental cross contamination from the foods that you eat, gluten left behind in things like cutting boards and scratched dishes. If you use wheat flour in the house, that can be a problem because it can get all over. Also using the same toaster can be a problem. Also watch for old bottles, butter, spices, jam etc. which might have old bread crumbs in them. You need to get all new. I had a problem with my old baking soda. I must have used a measuring spoon in it that I had used for flour previously. It takes a long time to figure out all the cross contamination issues. I hope she feels better soon. I felt much better as soon as I cut out bread and cheerios. Then it was very up and down as I figured out all the complications of the diet.

[geelet]

Hello - I was also sick for 10 years before being diagnosed. I didn't see any real improvement until about a year into the diet, then I finally felt more or less normal after about 2 years. It can take an adult's intestines up to 5 years to heal. I also agree with everyone else that it takes a long time to figure out all the possible sources of cross-contamination . Good luck!

[wajo427]

Thank you to all. We have done everything you have suggested. I have nothing in the house that isn't gluten free. We got rid of all our old utensils, toaster, plastic ware etc. I mean the works. She is now taking vitamins that her doctor told her she should take and the people at the drug store have called all of the companies to see that her medicines are safe. I am even gluten free at home because it is just easier and I don't mind the food at all. I do a lot of the cooking (old army cook) and have checked on all the spices and other things I like to use. In the last week she has had a couple of really good days and our spirits are beginning to rise. She felling good so far today and is on her laptop looking for makeup. No way is she leaving home with out it. Between all of you here and the internet in general I think we may be on our way. Knowing that all of you have been through a lot of the same things has given us hope instead of having rely on a doctor that has not been there. It seems more true coming from people like you. Thanks, Wayne

[tfrankenberger]

My wife was diagnosed with celiac about a month ago. We immediately went glutin free with everything but she doesn't seem to be getting any better. She has been glutin free for about 3 weeks. How long does it take to start seeing some improvement?

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.

[tfrankenberger]

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.

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.

[ranger]

You mentioned that your wife works in a scool cafe. Is it possible that she is getting glutened at work? Do they deal with a lot of flour? For years, I worked as a chef. I know I could not do that job today because of cc issues. I have been on the gluten-free diet for almost 4 months and still have some problems, but very much better. It just takes time to heal. She'll get better everyday.

[GottaSki]

Thanks everyone and to Wayne for starting this conversation. I have had a horrible week as the arthritis symptoms have become worse than ever before. Not sure if it is the increase of nightshades (a word I didn't even know 5 days ago) or just my body beginning to heal and adjust to actually digesting nutrients?

At any rate, this thread and these forums are such a comfort and source of information that I am very grateful for...celiac.com has become our homepage on our computers...the whole family dashes to the computer if we find an ingredient or product we are unsure of and instantly we have several opinions about gluten content &/or reactions by other celiacs.

Aside from the fact that doctors for 20+ years never considered Celiac - I am very grateful to have been diagnosed at a time when information is at our fingertips.

Hang in there everyone and thanks again!

[wajo427]

Well another week has gone by and my wife is doing better. She is talking about going back to work and a lot of the abdominal pain is starting to go away. She is even eating things she hasn't been able to in years. We finally found a pasta we both like and some breads. This was one of our toughest problems as where we live it is a trip to get to a store with any gluten free products. But it is getting easier as we become more educated.

I want to thank all of you for all the help. You have made the start of this road a lot easier.

Till next week, Thanks

Wayne

[wajo427]

Hi All, I haven't been on in a couple of weeks and wanted to give an update. My wife has been doing fairly well lately. We ran into a snag and I wanted to ask a question and give a warning at the same time. We bought the book Gluten-Free Shopping Guide and have been using it as a guide line. It gave advise on regular items from the store to help us stay gluten-free. We have run into a problem because a lot of the things it says are OK are not. My wife has had problems with a lot of the items and now doesn't trust the book. Has anyone else been through this and how much of the information in any of these books can you believe? It has created a huge stumbling block for us.

Thanks, Wayne

[Salax]

I have the book. So far *knock on wood* I haven't had any issues. The site does have updates of things that should be "crossed out" in the book. Like chicken broth and etc...What items are you thinking that are gluten-free that aren't? I would like to avoid those as well if you could share? I would also recommend looking at: Open Original Shared Link, they have items on the list that are in the book but are not gluten free. Maybe those are the problem items?

Best of luck-

[wajo427]

The things that come to mind from the book are Bush's original baked beens, Ore-ida Golden French Fries and Steak Fries and Miracle Whip salad dressing. We are still using the book but are a little skeptical. She also ran into trouble with Pepcid but I think we've got that one figured out. She used the wrong one and I replaced it with the one they suggest but haven't tried it yet. Thankyou to Salax for the link. I updated our book.

Thanks All, Till Next Time

Wayne