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How Long For Pain To Subside And Pale Stool To Return To Normal?
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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!

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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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