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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How Long For Pain To Subside And Pale Stool To Return To Normal?
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9 posts in this topic

Just diagnosed, postpartum (8weeks), post surgery and 43. Have been on a gluten free diet for a week - since last Sunday (at least I think I'm gluten free) and still having intermitent sometimes severe pain, extreme weakness, coordination issues/hazy feeling and pale stool that has not improved significantly. How long to wait before worrying that the symptoms are attributable to something else? When the doctors say 2 weeks, do they mean it will take 2 weeks to see any change or 2 weeks until you feel better???

Thanks so much in advance for any input!

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Different people heal at different rates, and the time is influenced by the amount of damage to the intestinal wall.

In my own case, the symptoms gradually abated. It took about six weeks for most of them to clear up, but it was about three months before I felt normal again. I had severe damage to my villi. I did notice some improvement after about a week.

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Thanks Peter, that was helpful input! How do you know how severly damaged the villi are? The doctor who did my endoscopy said there is no way to determine the extent of the villi damage, the biopsy just confirms the Celiac diagnosis. I specifically asked that question even though my brain is not working very well at the moment. I am learning that the doctors know far less than the people who have Celiac Disease!

I REALLY need to get some energy back - the baby I had 8 weeks ago was my 4th child. I cannot even got to the grocery store at the moment, I am so weak.

I would be SO grateful for some more input on this question - does it really take months to get back? YIKES! How can I help myself, do I need to do more blood work before getting B12 shots or taking supplements? I am like a car with a dead battery and I NEED A JUMP! Afraid to drink coffee - just eating clean food for now.

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Thanks Peter, that was helpful input! How do you know how severly damaged the villi are? The doctor who did my endoscopy said there is no way to determine the extent of the villi damage, the biopsy just confirms the Celiac diagnosis. I specifically asked that question even though my brain is not working very well at the moment. I am learning that the doctors know far less than the people who have Celiac Disease!

I REALLY need to get some energy back - the baby I had 8 weeks ago was my 4th child. I cannot even got to the grocery store at the moment, I am so weak.

I would be SO grateful for some more input on this question - does it really take months to get back? YIKES! How can I help myself, do I need to do more blood work before getting B12 shots or taking supplements? I am like a car with a dead battery and I NEED A JUMP! Afraid to drink coffee - just eating clean food for now.

Some of your questions are unanswerable because everyone is different. It depends on the type and degree of damage, how long before you were diagnosed that you had been suffering, how leaky your gut is, what nutrients you have not been absorbing well. From a personal perspective you should at least have a CBC, check levels of Vitamin D, folate, ferritin, magnesium, calcium, B12. These are often really low in celiacs and are a good starting point. Your doctor should be able to offer a little more information on your villi, I believe, although you apparently need to be a Marsh level III (out of IV) before the damage is detected on endoscopy (I am no expert here, being self-diagnosed, but get a copy of the report and there will be a description of the villi). E.g., did all samples show damage or only some.

It is true that many doctors know very little about celiac, which is why I am glad you found this forum; you will probably learn more here from the many people much more knowledgeable than I than you will from 99% of the doctors, which is unfortunate but true. While we are not doctors here and cannot substitute for them you will learn lots and lots and we are all here to support you. So ask away with your questions.

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As described to me by the GI who did my 2000 endoscopy, the walls of the small intestine should appear like a carpet, with the villi being the nap of the rug. My intestinal walls were smooth. He took tissue samples and the analysis was done, but he said that he knew what the result was going to be. When you can see the damage visually, things are far advanced.

I had been suffering significant symptoms for at least five years at that point, and was only marginally functional. I had bloating, anemia, B12 deficiency, explosive diarrhea, nausea and vomiting. I was also having serious difficulty controlling my blood sugar due to malabsorption (I am an autoimmune diabetic).

Progress began immediately, but it took time for a complete recovery. The nausea subsided over time. The last incident of vomiting was in the sixth gluten-free week. I have not vomited since. The diarrhea slowly abated, but there were regular instances into the third month. I still have occasional diarrhea.

My migraines stopped. It was almost a year before I realized, hey, I haven't had one of those headaches since I went gluten-free.

It sounds like you have been caught earlier, and will not take as long to recover. But remember, you must adhere strictly to the diet. Even a small amount of gluten can cause a major setback in the recovery process.

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As described to me by the GI who did my 2000 endoscopy, the walls of the small intestine should appear like a carpet, with the villi being the nap of the rug. My intestinal walls were smooth. He took tissue samples and the analysis was done, but he said that he knew what the result was going to be. When you can see the damage visually, things are far advanced.

I had been suffering significant symptoms for at least five years at that point, and was only marginally functional. I had bloating, anemia, B12 deficiency, explosive diarrhea, nausea and vomiting. I was also having serious difficulty controlling my blood sugar due to malabsorption (I am an autoimmune diabetic).

Progress began immediately, but it took time for a complete recovery. The nausea subsided over time. The last incident of vomiting was in the sixth gluten-free week. I have not vomited since. The diarrhea slowly abated, but there were regular instances into the third month. I still have occasional diarrhea.

My migraines stopped. It was almost a year before I realized, hey, I haven't had one of those headaches since I went gluten-free.

Sounds like you are doing really well - and your dealing with a lot! I have seen 2 GIs and the first one who did find the Celiac and did the endoscopy was just not nice, you know the type - scientific and no interpersonal skills. The second Dr who I will continue with took one look at the photocopied pictures of the endoscopy and said the same thing your Dr said - looks too shiny and smooth, I don't need to see the pathology report, you have it. I must have been in trouble for a while as I have every symptom or maybe being pregnant accelerates the disease and I got to an acute stage FAST. I am sure everyone is different and I am grateful for your response - it is good to know that even if improvement isn't quick, it is going to happen eventually! I too have had some migrains and the are HORRIFIC so it is wonderful they are gone. I wonder if my migraines were attributable to this problem too, I have just had a handful over the years.

Thanks SO much again!

It sounds like you have been caught earlier, and will not take as long to recover. But remember, you must adhere strictly to the diet. Even a small amount of gluten can cause a major setback in the recovery process.

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Just diagnosed, postpartum (8weeks), post surgery and 43. Have been on a gluten free diet for a week - since last Sunday (at least I think I'm gluten free) and still having intermitent sometimes severe pain, extreme weakness, coordination issues/hazy feeling and pale stool that has not improved significantly. How long to wait before worrying that the symptoms are attributable to something else? When the doctors say 2 weeks, do they mean it will take 2 weeks to see any change or 2 weeks until you feel better???

Thanks so much in advance for any input!

Let me add my pennys worth here. My experience was mixed as I began by removing candida from my diet, however this was just a side issue. Gluten compromises the gut and allows candida to overgrow, it can also cause lactose intolerance. I agree with all the others comments that people are different, heal at different rates, have different reactions. My suggestion is that while remaining gluten free, and gluten might be the underlying issue, do not rule out related problems. Over time they will also improve but no harm in being aware if you react to yeast products and sugars that feed candida, or issues with lactose that cause their own symptoms. I am gluten-free for 6 months and yeats free for a year and have improved greatly, but it took three weeks for me off gluten to see real benefit, but improements keep coming. I suggest you consider seeing an iridologist to check the state of your organ systems, adrenals, liver etc to se if they need some help to detoxify.

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Just diagnosed, postpartum (8weeks), post surgery and 43. Have been on a gluten free diet for a week - since last Sunday (at least I think I'm gluten free) and still having intermitent sometimes severe pain, extreme weakness, coordination issues/hazy feeling and pale stool that has not improved significantly. How long to wait before worrying that the symptoms are attributable to something else? When the doctors say 2 weeks, do they mean it will take 2 weeks to see any change or 2 weeks until you feel better???

Thanks so much in advance for any input!

Are you sure you are gluten free, I am still learning that is the hardest part. I have been reading another post "rain barrel affect" and it makes sense. What I can't figure out is wheteher I am still getting into gluten or it is the process of healing. Every three- five days, my stool will become pale and different and then I have DH on a couple fingers following that. I have been assuming I have been glutened again, but not as bad when I was very sick with all kinds symptoms, maybe this is just healing?? Didn't have DH before going gluten free like what is happening now. My other symtoms have dissappeared including the extreme fatique... does take time. Everyone is different.

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Are you sure you are gluten free, I am still learning that is the hardest part. I have been reading another post "rain barrel affect" and it makes sense. What I can't figure out is wheteher I am still getting into gluten or it is the process of healing. Every three- five days, my stool will become pale and different and then I have DH on a couple fingers following that. I have been assuming I have been glutened again, but not as bad when I was very sick with all kinds symptoms, maybe this is just healing?? Didn't have DH before going gluten free like what is happening now. My other symtoms have dissappeared including the extreme fatique... does take time. Everyone is different.

Have you checked your soap, shampoo, skin products? I just got a tip from someone that those things can undermine you and specifically I shouldn't use handsoaps or santizers - she said buy Dove senstive and just use that. Could that be the issue? Particularly since your getting DH on your hands? I am a rookie, but just trying to be helpful! GOOD LUCK!

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