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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gut Healing Support
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what can I do to improve the gut-healing process? I don't necessarily want to speed it up (I can be patient), but I want to know how best to support it. My doctors aren't any help in this area. I went gluten-free in July, but since then I've found gluten in OTC's I was taking, plus cross-contamination episodes. So I probably have only been gluten-free for a few weeks at this point (how frustrating!!). What can I do to help my gut heal? Do I need to remove dairy? I am severely hypoglycemic (reactive, need a lot of protein and low carbs), iron-deficient anemic, malabsorption/malnourished, and losing weight faster than I'm comfortable with. I'm hungry all the time and don't want to take dairy out of my diet if I can avoid it. What else can I do? Probiotics/Enzymes? What kinds and how much? What kind of practitioner should I seek out for help locally--Naturopathic? Kinesiologist? Thank you!

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A Naturapath would probably be a good bet. Mine keeps mentioning "building the gut" and I keep on running.

Would you elaborate on your hypoglycemia? I appear to be heading down that road myself, and need pointers. How were you dx'ed with hypoglycemia?

I was emailing with my ND today and she kept saying liver/thyroid/gallbladder and adjusting to gluten-free and healing and it taking a while. She said the nausea was from the impaired liver function and the gallbladder. I'm thrilled.

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At celiac conferences, it is often mentioned that L-glutamine helps to heal the gut. I had been gluten free for three years when an integrated medicine doctor recommended that I take Metagenics UltraClear Sustain Medical Food, which contains L-glutamine. He told me that it would make me feel as though I didn't have celiac....and he was right. I put one tablespoon into a smoothie every day, and I felt fantastic after only a few weeks. I continued to take it for about a year, and even when I discontinued it, I continued to feel great.

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At celiac conferences, it is often mentioned that L-glutamine helps to heal the gut. I had been gluten free for three years when an integrated medicine doctor recommended that I take Metagenics UltraClear Sustain Medical Food, which contains L-glutamine. He told me that it would make me feel as though I didn't have celiac....and he was right. I put one tablespoon into a smoothie every

day, and I felt fantastic after only a few weeks. I continued to take it for about a year, and even when I discontinued it, I continued to feel great.

Wow. Gotta get me some of that! Seriously!

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what can I do to improve the gut-healing process? I don't necessarily want to speed it up (I can be patient), but I want to know how best to support it. My doctors aren't any help in this area. I went gluten-free in July, but since then I've found gluten in OTC's I was taking, plus cross-contamination episodes. So I probably have only been gluten-free for a few weeks at this point (how frustrating!!). What can I do to help my gut heal? Do I need to remove dairy? I am severely hypoglycemic (reactive, need a lot of protein and low carbs), iron-deficient anemic, malabsorption/malnourished, and losing weight faster than I'm comfortable with. I'm hungry all the time and don't want to take dairy out of my diet if I can avoid it. What else can I do? Probiotics/Enzymes? What kinds and how much? What kind of practitioner should I seek out for help locally--Naturopathic? Kinesiologist? Thank you!

I was doing some reading on this today and I don't really have any answers unfortunately. A lot of what I read came from Heidi of adventures of a gluten free mom and her journey to heal herself and her family. The clinic they went to suggests a few different tests to rule out any related obstacles (gut flora was the new one I've never heard of). The clinic also suggests eliminating dairy since casein is partially cross reactive with gluten. I'm not too sure of the science behind cross reactivity but it certainly makes sense and cutting out dairy is the easiest step in their list.

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If you really want to concentrate on healing your gut, you really do need to avoid dairy. Realize it is not forever, it is only temp. I would definately invest in a good quality probiotic, not the stuff that sits on grocery store shelves. You need to build the good bacteria and the probiotics will help you with that. Are you taking vit supplements for your anemia? or any other supplements? Any burning going on in the stomach?

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Thank you for your replies! I'll look into L glutamine.

PricklyPear, my hypoglycemia escalated last fall and landed me in the emergency room with a hypoglycemic attack--I thought I was having a stroke (facial numbness, cold sweats). I insisted that my dr. do a full blood glucose test even though they fluffed it off, and this is what started my path to removing gluten. My blood sugar dropped down into the 50s during the test and I almost passed out in the lobby where they had me wait. Make sure to accept the bed they offer you in the lab during the testing period! I have to eat carefully regulated fat/protein/carb meals every 2 hours. When I have a gluten-exposure, by blood sugar is terrible--it yo-yos, and my vertigo, dizziness, and blurred vision return. During the worst of it, I could hardly sit upright for fear of falling over.

AVR, I will definitely look into the probiotics, just not sure where to go? Health food stores? I have been taking iron supplements for almost a year now, and of course a multi and some C and D. this time last year I was nearly bed-ridden with hypo, body pain, stomach problems and fatigue. Doing a lot better now, as long as I don't have a gluten exposure. I did stop eating high-lactose dairy this week. My stomach only "burns" (not sure I would call it that though??) when I have a gluten exposure, as far as I can tell. I have nausea, cramping, and D for about a week, plus all of the peripheral symptoms. Then I feel great again. I also have some ataxia concerns, seeing a neurologist next month. But despite all this, and all of the doctors, I don't feel like there is anyone committed to helping me through the gut-healing process, you know? they all just sort of scratch their heads because they can't throw pills at it. I have heard kinesiologists are helpful.

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When I have a gluten-exposure, by blood sugar is terrible--it yo-yos, and my vertigo, dizziness, and blurred vision return. During the worst of it, I could hardly sit upright for fear of falling over.

AVR, I will definitely look into the probiotics, just not sure where to go? Health food stores? I have been taking iron supplements for almost a year now, and of course a multi and some C and D. this time last year I was nearly bed-ridden with hypo, body pain, stomach problems and fatigue. Doing a lot better now, as long as I don't have a gluten exposure. I did stop eating high-lactose dairy this week. My stomach only "burns" (not sure I would call it that though??) when I have a gluten exposure, as far as I can tell. I have nausea, cramping, and D for about a week, plus all of the peripheral symptoms. Then I feel great again. I also have some ataxia concerns, seeing a neurologist next month. But despite all this, and all of the doctors, I don't feel like there is anyone committed to helping me through the gut-healing process, you know? they all just sort of scratch their heads because they can't throw pills at it. I have heard kinesiologists are helpful.

I would be very interested in hearing what your neurologist tells you at your appt. I have been dealing with ataxia & vertigo issues for 8 months now. I have had very little help from my docs. I did increase my vit D intake which has helped.

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So, I was curious and asked my ND about the Metagenics product. She knows a rep for them (who is also Celiac and an ND) and this is what she said and reco'd to me:

They are top-of-the-line as far as supplements go.

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I would be very interested in hearing what your neurologist tells you at your appt. I have been dealing with ataxia & vertigo issues for 8 months now. I have had very little help from my docs. I did increase my vit D intake which has helped.

I definitely will. I am skeptical too; the docs where I live don't seem to know anything about celiac/gluten intolerance--sometimes I think I know more than they do. I'm concerned the neuro won't be open to gluten ataxia, even though it's been documented. That's just my experience lately, the docs around here won't take this stuff seriously unless you have the standard blood work/biopsy affirmation, which I did not. Plus, HMO's make it impossible for docs to stay up on the latest stuff. My PCP is on board, but he can only do so much. *sigh* Can you tell I'm a little jaded? ;) But I'll certainly let you know what happens!

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I definitely will. I am skeptical too; the docs where I live don't seem to know anything about celiac/gluten intolerance--sometimes I think I know more than they do. I'm concerned the neuro won't be open to gluten ataxia, even though it's been documented. That's just my experience lately, the docs around here won't take this stuff seriously unless you have the standard blood work/biopsy affirmation, which I did not. Plus, HMO's make it impossible for docs to stay up on the latest stuff. My PCP is on board, but he can only do so much. *sigh* Can you tell I'm a little jaded? ;) But I'll certainly let you know what happens!

I'd appreciate that. Good luck with your doc! I go back in 2 weeks to get the results of my MRI and my diabetes test.

I was reading an interesting article last night that links yeast to problems with ataxia also but when I looked at the diet, with the exception of a piece of fruit a day I am eating a fairly yeast-free diet. Have you found any connections to your ataxia issues, what makes it worse or better? I do know alcohol aggrevates my issues so I have really been watching that. The longer I stay away from glutens it also improves and the vit d seems to have helped.

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We are using the GAPS Diet which is aimed at restoring gut health. I've posted a lot about it on this forum and the blog linked from my profile.

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I just read up on what can cause ataxia, and it appears that a deficiency in manganese can cause it. I came to believe that I was low in manganese because my tendons had become floppy....so I know it can happen....and now my tendons are healthy again. You might try supplementing with chelated manganese to see if the ataxia improves. When it comes to celiac, I always suspect nutritional deficiencies are causing symptoms.

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I'll look into GAPS and maganese. Thanks for the suggestions--I'm thinking I should have a naturpath look over my lab work to tell me what vit deficiencies I really have. I fear the traditional docs look past some of this.

AVR, my ataxia gets worse when I'm gluten-exposed, definitely, although part of that is hypo related (I'm sort of like a zombie in terms of cognition and movement when I've been glutened). Coffee doesn't help either (I know I need to cut it out but really, can't I have a vice? :) But because I'm not very far into the healing process yet, it's difficult to say what makes it better or worse right now. And I just learned about ataxia, and started connecting the dots, so my awareness of symptoms/environment connections is rather new. I should probably do a symptom diary. What about you? Have you discovered any connections? And if you don't mind, what are your ataxia symptoms like? I have muscle weakness/twitching, peripheral neuropathy (primarily escalated by heat exposure), vision issues, balance/vertigo/depth perception, numbness/cold, raynaud's like symptoms, headaches.

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    • Just thought of something else.  Have you tried cream of rice cereal?   When I was at my worst, I'd have this a few times a day to settle my stomach. 
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    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
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