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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.

Lack Of Energy And Constipation.....still....
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21 posts in this topic

I've been gluten free for about a month or more now and my constipation has not gotten any better. Also need a boost in energy. Got a b12 injection last week by dr but is not helping. Ive gotten some energy back but not as much as I had hoped. Any suggestions? If you recommend any product can you tell me the name.

Thanks bunches!

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I recommend FRS energy drink, sold at GNC and some supermarkets. I'm not financially affiliated with them in any way, lest you think this is a plug. I just swear by it. I'll have one at lunch if I'm havin a tough day energy wise and it gives me a really relaxed energy for the second half of the day. It was originally developed for athletes and cancer patients on chemotherapy. It has bioavailable b vitamins and quercetins. It really helped when i was incredibly sick last fall. :)

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Did you get your thyroid checked? :blink:

I feel much better with Biotin vitamin supplementation.

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A month is not long enough for most people to feel completely better, so it may just take more time, but have you had your thyroid checked? Hypothyroid can cause constipation and lack of energy, and often goes hand in hand with celiac.

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I had bm changes for at least 6 months. One day c, next day fine, then something totally undefinable - and this was after chronic c for years.

Hypothyroidism will cause c. Many people have both issues, but I wouldn't panic about c yet.

Try digestive enzymes and probiotics.

And lay off sugar, I found that gives me c too.

Get yiur vitamin levels checked and supplament as needed. The exhaustion is normal. Just give it time.

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Sorry, yes I've had my thyroid and a couple other vit.

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Thanks all! You have all been great!

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Hi there

Know how you feel.

Canned prunes in apple juice seem to help me. Also some nuts daily and or course, water. Hot water seems best.

Hi Prickly - never thought of sugar being a cause but now you mention it .....

Also I think soya also gets me.

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Gut problems can goof up your magnesium level also. You might consider supplementing. I take 450 mg twice a day.

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I found I needed to supplement 2000mg D3 daily to get my energy back up (and this was with testing w/ moderate normal levels of D). My doc started me with 1000mg and upped that about a month later.

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Seven months ago I went to my Doctor and said I wanted her to take what ever blood test she needed because I wanted to make sure feeling so bad for years was because of menopause. I blamed every symptom on this change starting at 42 years old. I couldn't take it any more. Once the tests came back, I discovered I had hypothyroidism and was given a perscription. I am not a complainer (that is why it took me so long to have a simple blood test done)but I really did not want to go on medication so I immediately went to a nutrionalist. She tested me for food sensitivies and I came up with so many I was in total shock! Gluten, dairy, crab, shrimp, tuna, peanuts, soy, popcorn, apples, bananas and many more. She put me on many suppliments (I was only taking calcium at the time and no perscription medicines). Not having a clue that the things I was eating really had a negative impact on me from a digistive perspective, I blindly followed her advice. I was very strict with the "hope" I would feel better. Most people were not supportive of my change in diet and didn't believe anything this doctor had to say. I am strong person so I really didn't care what they thought as they were not feeling what my body was feeling. None the less, it is a very hard transition. I had experienced major fatigue, tingling in hands and feet, extreme brain fog (where I felt I could barely keep up with work), hot flashes that would make we want to faint, dry skin, brittle nails, hot/cold intolerance, etc. I did not take the medication and hoped the diet change would make the difference. It took two full months on extreme effort before I could say I felt better. Some people are so lucky they can feel a change within a few weeks. Three month into the diet change I had another blood test and, unfortunately, there was no change with my thyroid reading at all but I felt so much better that I felt the diet change was too important for me to abandon. I have since gone on the medication. Between the diet change, nutritional suppliments and I'm sure the medication, I feel like a real person again with periods of very high engery. I know I am still on my path to healing and still don't like the diet restctions, however, I won't go back to my old ways since I feel so good. I am sure for the rest of my life I will depend on a nutritionalist to ensure I am staying on track. Now I am at the point where almost every receipe can be made using substitutes and the majority of them leave me with a feeling that I am not being deprived and usually very satified. It just takes more effort. The hardest part is the realisation that this change does not happen over night. It took me a long time to get to the point where I felt so bad and it will time to get back to where I need to be but what is the alternative? I am so much happier now with much less anxiety. Stick to it. It's worth it.

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You want your B-12 to be around 1100 usually. I take weekly injections.I started out with tablets, then to monthly injections now weekly...plus check Vit D,Thyroid testing not just TSH... A1C, Glucose calicum for starters.

Miralax & mineral oil are good to have on hand for the Big C, not habit forming if natural things like prunes warmed or juice are not working, Also drink plenty of PURE water not city water...

You have just started on the gluten-free journey it takes alot of time. Remember you are taking away something your body has dealth with for years wheat & gluten so the body needs to learn to adjust to a new plan..

Also other foods may be troubling you ie: dairy, soy , etc....

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SI had experienced major fatigue, tingling in hands and feet, extreme brain fog (where I felt I could barely keep up with work), hot flashes that would make we want to faint, dry skin, brittle nails, hot/cold intolerance, etc. I did not take the medication and hoped the diet change would make the difference. It took two full months on extreme effort before I could say I felt better.

Your symptoms are so much like mine! I have only recently been diagnosed and have only been gluten free for a little over 2 months. While my gi problems have improved, the others have not. I just had my first blood work done yesterday. I am wondering if some of these symptoms will be from thyroid problems. I am so sick and tired of being sick and tired!!

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You want your B-12 to be around 1100 usually. I take weekly injections.I started out with tablets, then to monthly injections now weekly...plus check Vit D,Thyroid testing not just TSH... A1C, Glucose calicum for starters.

Miralax & mineral oil are good to have on hand for the Big C, not habit forming if natural things like prunes warmed or juice are not working, Also drink plenty of PURE water not city water...

You have just started on the gluten-free journey it takes alot of time. Remember you are taking away something your body has dealth with for years wheat & gluten so the body needs to learn to adjust to a new plan..

Also other foods may be troubling you ie: dairy, soy , etc....

How do the injections work for you? I just took my first one today. I too will do them once a week. Id sure like to feel better. Im just recovering from cancer and getting my energy back would be the final part of my journey !!

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Here's what helps me with "C" :

MiraLax - 17g twice daily as needed

Senna tablets - 1 tab twice daily as needed. *I would start with one or the other, just once a day.* My "C" is chronic, hence the larger doses...

Also, probiotics like Culturelle seem to help. As others have mentioned, try avoiding soy, dairy & sugar. Good luck to you!

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I have been gluten-free for 1 month now, was doing really. I was starting to feel alot better and was so excited that I was feeling myself again. Then this past week I feel like I'm back to square one, my nervous, brian fog, tiredness all this feeling came back. I am sticking to my diet and everything. I just don't understand...Sooo upset I just don't understand. Any advice?

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Taking B12, a good multivitamin with a probiotic, watching what I eat and taking it a day at a time. Hope this helps. I hit a slump about then too and started the above and I feel much better. Hang in there.

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I have been gluten-free for 1 month now, was doing really. I was starting to feel alot better and was so excited that I was feeling myself again. Then this past week I feel like I'm back to square one, my nervous, brian fog, tiredness all this feeling came back. I am sticking to my diet and everything. I just don't understand...Sooo upset I just don't understand. Any advice?

It's normal to have a variety of odd symptoms as you heal and adjust to the new diet. Be sure you aren't getting any trace gluten. Even a very tiny amount can get your system raging.

I also recommend getting a hydrogen breath test for SIBO if this continues. If you have SIBO you could get reactions from the toxins they emit as they consume your food.

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I have been gluten-free for 1 month now, was doing really. I was starting to feel alot better and was so excited that I was feeling myself again. Then this past week I feel like I'm back to square one, my nervous, brian fog, tiredness all this feeling came back. I am sticking to my diet and everything. I just don't understand...Sooo upset I just don't understand. Any advice?

This is very common. When I first went gluten free I felt better immediately, then started feeling crummy again a short time later. For many it can take atleast a year for the gut to heal (depending on the amount of damage). Also, simply removing the gluten is a great first step, however to actually heal the gut you need a solid supplementation regimen- Vitamin D, EPA/DHA, colostrum, B vitamins, probiotics, and a healthy diet are all recommended for gut healing. In addition, ginger is great for settling the stomach and is a powerful anti-inflammatory. Aloe vera is also great and helps with regularity. Magnesium also helps with regularity and anxiety. Make sure you are taking high quality supplements and not just buying them at the local WalMart as this will make a huge difference in the quality of your supplements.

Hope this helps. :)

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I was gluten-free for almost 3 months and I didn't notice much change. Well, I did have a couple screw ups, or likely screw ups, and I think I should have laid off dairy, not just lactose.

Since going back to gluten for biopsy, I notice now that I am more bloated and peripheral nerves feel so bad they hurt sometimes again. Unfortunately, my energy and ability to concentrate haven't changed.

I'm giving myself 6 months to start feeling better in this regard, at least, before I start to worry that there's other issues they haven't found yet. Some people won't even have fully healed intestines after a couple years. Plus, you know you won't be getting proper nutrition UNTIL they're healed too, and then you still will probably need to build up nutrients and vitamins again. This stuff takes time.

Ahh, you say this week you've been bad. Are you sure it's not simply pms? Perhaps you never noticed pms symtpoms before because you already felt bad.

(I don't mean to say 'only' pms as if what you're experiencing is 'only' so bad, but rather that pms is a usual thing many women, including me, experience, that it's not some unknown thing making you ill)

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I was gluten-free for almost 3 months and I didn't notice much change. Well, I did have a couple screw ups, or likely screw ups, and I think I should have laid off dairy, not just lactose.

Since going back to gluten for biopsy, I notice now that I am more bloated and peripheral nerves feel so bad they hurt sometimes again. Unfortunately, my energy and ability to concentrate haven't changed.

I'm giving myself 6 months to start feeling better in this regard, at least, before I start to worry that there's other issues they haven't found yet. Some people won't even have fully healed intestines after a couple years. Plus, you know you won't be getting proper nutrition UNTIL they're healed too, and then you still will probably need to build up nutrients and vitamins again. This stuff takes time.

Ahh, you say this week you've been bad. Are you sure it's not simply pms? Perhaps you never noticed pms symtpoms before because you already felt bad.

(I don't mean to say 'only' pms as if what you're experiencing is 'only' so bad, but rather that pms is a usual thing many women, including me, experience, that it's not some unknown thing making you ill)

FYI it took me closer to 9 months to have neuro stuff really settle. And that was after supplementing, retesting, then upping supplaments again.

And when I got glutened last week - I got stomach cramps, acid, and weird muscle cramps and the twitch in my eye came back - but this time in my cheek.

So, give it time and if you get glutened it won't set you back to zero but it can sure bring it back in a flash.

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But I want to say why while you so want it to be "Celiac" and not the "C" word I think Pellagra should be considered as a differential diagnosis. I say this and repeat it to those who will listen.  Niacinamide helped me. This article on celiac.com explains why this might be so https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html and if taking a b-complex 2 to 3 a day (and Niacinamide) for a couple months greatly alleviates many of your GI problems then you also  have had pellagra co-morbid and the doctor's don't recognize it in a clinical setting today .  . .  mainly because they don't know to look for it any more today. I wrote about how to take niacinamide in my blog post about this topic so I wouldn't have to retype it several times. I want to quote from the discussions section the heart of most good research from the American Journal of Clinical Nutrition research article linked in my posterboy blog thread about how to take niacinamide and why you would want too Faq. poster here again for those who want to do the deep research from their discussion section. http://ajcn.nutrition.org/content/85/1/218.full "Random spot urine sampling, together with the measurement of 1-MN and 2-PYR concentrations, has been suggested as an alternative because it avoids these issues and would provide a guide to status (22). However, the ratio of these metabolites has been shown to vary according to the time after the last meal because they are sequential intermediates on the same catabolic pathway (21). This makes the ratio an intrinsically unstable variable for use in population surveys; in the present study we chose to use cutoffs previously established for the excretion of individual metabolites expressed relative to creatinine. The subjects whose excretion fell below the established cutoffs for either metabolite were considered to be deficient." A little technical but essentially we soo need b-vitamins that even if you have a test for low vitamin b-3 the amount of the b-3 in your meal (f you have not fasted before the test) can cause us to test in a low normal range thus making taking of the b-vitamin a self test of cause and effect. Did you get better after taking Niacinamide then if taking Niacinamide helped your GI problems you were low in Niacinamide. This is typically a 24 hour test and most people don't fast 24 hours before going to the doctor and will often fail this test since our body has absorbed enough from our food to help us pass the thresh hold set at the minimum level. 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Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems. the gluten free works site also has a great article on this topic. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer. I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient. because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more. ***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease. Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
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