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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 Celiac.com's FREE weekly eNewsletter   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 Next? Still Tired
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Hey fellow Celiacs,

first off thanks for the sense of support and knowledge you all offer. this forum is a wealth of knowledge.

I'm a 23 year old male and was diagnosed almost 3 months ago. I've been really good the past 2 months with ingredients and CC, and have seen improvements in my energy levels. I do however, still have times where I'm exhausted, unmotivated and hence pessimistic. These bouts are between a couple hours and a couple days, and are particularly frustrating because I work with people in the wilderness 8 days in a row (energy needed!). Also, I'm frequently tired just after eating, even when I'm positive it's all gluten-free. Some mornings I'm ready to rock, sometimes I don't leave to house. What's the deal!?

My question is where to go from here. Reading the forums has left me confused as to what to pursue next. Should I pursue:

1) Vitamins? I'm taking omega 3 fish oil and vit D daily, last checked my D levels were deficient but B were OK. Should I take magnesium or multis?

2) Do I just need to give it more time?

3) Do I have blood sugar issues? Often getting tired right after eating is weird to me, and I feel like my energy is variable throughout the days and weeks.

4) What should I do when I get into a low energy funk? I try to eat nutritious foods, but otherwise I just get discouraged.

5) Should I get tested for anything else?

6) Doctor vs Nutritionist? Either? Neither? Both?

Thank you thank you thank you for sharing your knowledge with me.

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You are still early on in the diet so there's still definitely much room to improve. You are starting to gain back some energy, so what are you doing with it? Have you increased your physical activity? Some times the best way to feel more energetic is to get out there and burn some energy. Go for a run, a long walk, try a yoga or martial arts class, get a gym membership or just go dancing. If perchance you just go from your breakfast table to your car to your office desk to your dinner table to your couch to your bed then you're not really giving your body much of an excuse to pick up it's energy levels. Physical activity is remarkably important for all aspects of "you". Pick up this month's Scientific American Mind for a nice read on that subject.

Of course, you do mention working out in the wilderness so that whole previous advice might be pointless. Why do you mention blood sugar issues? Do you think the peaks and valleys of the days energy levels somewhat correspond to consumption levels/times/frequency? How is you diet? A high carb diet can cause rapid fluctuations throughout the day of energy levels as your body quickly depletes the carbs from the last meal. If you think this may be the case high fat/low carb diets are much easier on the system in the long run and have none of the fluctuations that a high carb diet has.

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The suggestions you've been given thus far are all good.

I do think it would probably be very helpful to try some supplements. A strong co-enzyme B-complex, magnesium, sublingual methylcobalamin tablet, and a multivitamin/mineral formula would be where I'd start. Possibly zinc too.

How's your iron and ferritin levels?

For the tiredness after eating, perhaps you need digestive enzymes. Look for the kind derived entirely from microbes. Not only do they survive the acidity of the stomach, but you'll be avoiding grain-sourced enzymes (I often see barley enzymes in these things, such as maltase or malt diastase). NOW Foods and Doctor's Best both have a microbial-derived formula. Some formulas are much more comprehensive in terms of the range of enzymes they contain, so if you can determine which foods get you down, you may be able to get a formula which better targets those types of foods.

You may also have developed additional food sensitivities. That is quite common. Try avoiding the top allergens, and see how you feel. Besides wheat, there's dairy, soy, corn, eggs, tree nuts, peanuts, and shellfish. But we're all different, so it can help to keep a food journal, and look for patterns linking foods to how you feel. Sometimes, a reaction can takes days to manifest.

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You are still early on in the diet so there's still definitely much room to improve. You are starting to gain back some energy, so what are you doing with it? Have you increased your physical activity?

I would be careful about this, since you are still in recovery. I was a very active person before I got sick from this condition. My instinct is to exercise since I know it's really good for me when I'm healthy. Ordinarily, I feel great when I get a lot of exercise. But during my healing stages, I've found that exercise can make me more tired.

My acupuncturist recognizes this and has cautioned me not to overdo it. She says that I am "weak" and I need to slowly add exercise back into my life. She does recommend it, but she literally said, "if you walk around the block one week, then the next week you should only walk around the block twice." I didn't tell her that I walked 2 miles instead of 2 blocks. ; )

From what I've seen on this board, healing from this condition takes a long time. I'm on my sixth month and have a way to go, but I am also older than you (I'm 39). I would definitely recommend taking a multivitamin as a next step to eliminate any vitamin deficiencies, but in general if you're generally getting better I think that you're on your way!

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1) Vitamins? I'm taking omega 3 fish oil and vit D daily, last checked my D levels were deficient but B were OK. Should I take magnesium or multis?

2) Do I just need to give it more time?

3) Do I have blood sugar issues? Often getting tired right after eating is weird to me, and I feel like my energy is variable throughout the days and weeks.

4) What should I do when I get into a low energy funk? I try to eat nutritious foods, but otherwise I just get discouraged.

5) Should I get tested for anything else?

6) Doctor vs Nutritionist? Either? Neither? Both?

Thank you thank you thank you for sharing your knowledge with me.

1) Vitamins: Low D can make you tired. Be sure you're taking enough to get your levels back to normal. I think a lot of people with celiac benefit from a high quality multi and magnesium/calcium. It seems to take a while to get to normal nutritional status.

2) Yes, more time might help, especially time to get your vitamin D back to normal.

3) If you're eating a lot of gluten-free specialty foods, they do tend to have a higher glycemic index than their wheat counterparts. I crash badly from white rice too. Reactive hypoglycemia and fatigue can also be a sign of another food sensitivity. Consider keeping a food diary to help track what foods or additives bother you.

4) The most important thing is to remember that the funk will end. Don't allow yourself to wallow in it. Sometimes I'll have a Red Bull, a packet of Emergen-C, or even better a fruit smoothie like Odwalla. Somehow the sugar and soluble vitamins are really helpful to get through a bad day.

5) You should have a thyroid test. A lot of celiacs are hypothyroid.

6) Probably nutritionist unless you are having other symptoms.

Oh - it also occurs to me that you might be getting into small amounts of gluten my accident. Any chance of that? Do you live with gluten-eaters, eat out a lot, or eat a lot of processed foods?

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You may also have developed additional food sensitivities. That is quite common. Try avoiding the top allergens, and see how you feel. Besides wheat, there's dairy, soy, corn, eggs, tree nuts, peanuts, and shellfish.

I agree. I recently got a food allergy panel done and it was discovered that I was highly allergic to eggs - no wonder I often wanted a nap after breakfast :blink: It may be worth having a comprehensive panel done. The other thing I found helpful was taking liquid vitamins on an empty stomach. No matter what potency I got in regular vitamins, I don't think I absorbed much from them. They just turned my pee bright yellow (sorry, TMI) and upset my stomach.

I also agree with the suggestion to get a thyroid panel done - and a comprehensive one at that. My TSH level is perfect but my T3 (active hormone) is low and that affects energy levels.

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THANK YOU!!!

your replies gave me a great sense of what to explore next, and empowerment over the gluten demon. I got a probiotic and multi to start.

Exercise does help, but when I'm tired it's just fighting through the fatigue and tired after. Good for the mind, doesn't feel good for the body.

I mention blood sugar because I often get really tired directly after eating, and when I haven't eaten in a while. Per your suggestions I will get an allergy panel done, but I was wondering if anyone has experienced the same thing.

1) Anyone experience the same type of fatigue?

2) I eat a lot of gluten-free granola and oats, does anyone have problems with these?

3) I heard vitamins are no good if they turn your pee colors, am I not absorbing my multi then?

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Try dropping the oats. About 10-15% of celiacs react to the avenin protein in oats is if it were gluten. Recommendations in the papers on oat sensitivity are that newly diagnosed celiacs avoid them completely, and that people adding oats once they heal have a blood test and biopsy 6-12 months after adding them.

A vitamin turning your pee bright yellow means your body didn't need the full amount of riboflavin (B2) at that moment. There's no way to tell whether or not you needed the other things in the vitamin pill. Spreading out the dose more and taking vitamins with food can help absorption as you heal.

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I agree. I recently got a food allergy panel done and it was discovered that I was highly allergic to eggs - no wonder I often wanted a nap after breakfast :blink: It may be worth having a comprehensive panel done. The other thing I found helpful was taking liquid vitamins on an empty stomach.

Can anyone recommend a good gluten free liquid vitamin?

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Can anyone recommend a good gluten free liquid vitamin?

My naturopath recommended Isotonix. It comes in a powder form that you mix with an ounce of water and take on an empty stomach. My muscle twitches, bruising and heart palps resolved on these. They aren't cheap though!

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Have you had Complete Blood Tests? I notice you have low Vit D. This site is a must read. http://parathyroid.com/low-vitamin-d.htm

You need calcium, iodized calcium and parathyroid hormone to be tested and normal on the same day. Anything that looks out of range or slightly odd needs further tests.

Thyroid tests - TSH , Free T4, Free T3, Antibodies. Iron , Ferritin, B12.

I would drop the oats. Some Celiacs react to the oat gluten just like wheat, barley, rye gluten.

Try to avoid soy and dairy too. Eat lots of fresh fruit , vegetables, and unmarinated meats.

But try to find out what is causing that low Vit D. If you have Hyperparathyroids - it is the body's way to protect you. It lowers the D to preserve the bones. Adding D then upsets the calciums again and makes you fatigued and achey. If left untreated it leads to osteoporous and strokes and cancers. Its nasty and most Drs have no idea. 1 in 100/200 have hyperpt and most will never know.

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Have you had Complete Blood Tests? I notice you have low Vit D. This site is a must read. http://parathyroid.com/low-vitamin-d.htm

You need calcium, iodized calcium and parathyroid hormone to be tested and normal on the same day. Anything that looks out of range or slightly odd needs further tests.

georgie,

You really seemed informed about hyperparathyroidism. I hope you can answer some questions for me.

I had 3+ parathyroid glands removed about 18 months ago due to hyperparathyroidism.

I haven't had my calcium and D levels checked in nine months. I have a DO appointment in two weeks and would like to get them checked again as I'm hoping to cut down on the supplements I take. Should I have my PTH level checked? I saw my endocrinologist nine months ago and he didn't order it. I feel it is important to know the level. Isn't that as important as the other tests?

My last test results were: calcium 8.5 (8.5-10.5), 25 hydroxyvitamin D2 D3 48 (30-80), phosphorus 4.3 (2.5-4.7)

The test results back in July, 2009 were calcium 8.8, phosphorus 4.1, vitamin D 1, 25-dihydroxy 47 (18-78), and Component Test PTH, Intact 29 (15-65) along with calcium 8.5 (8.5-10.5). The numbers in parenthesis are the normal range. I really don't understand why there are two different calcium levels. I have no idea why the one with the component test is lower.

The endocrinologist wants me to stay with the same dose of calcium. I really would like to cut down on it.

I don't know if I'll be returning to the endo as I really didn't care for him as a doctor. I feel he doesn't listen to me. I am hoping to just have my DO order my blood tests from now on and if things look normal stick with him.

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Could your surgery have left you a little Hypo? Hypoparathyroidism is discussed here http://parathyroid.com/hypoparathyroidism.htm and can be the result of surgery. What type of calcium do you take ? Some work better than others and some upset the Vit D more than others. Your Endo does not sound helpful at all. I would be searching for another as well! I hope you can find someone nicer soon. I assume that Dr Norman did not do your surgery. Could you do a consult with him and would your Endo take advise ?

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Could your surgery have left you a little Hypo? Hypoparathyroidism is discussed here http://parathyroid.com/hypoparathyroidism.htm and can be the result of surgery. What type of calcium do you take ? Some work better than others and some upset the Vit D more than others. Your Endo does not sound helpful at all. I would be searching for another as well! I hope you can find someone nicer soon. I assume that Dr Norman did not do your surgery. Could you do a consult with him and would your Endo take advise ?

I checked the website and it doesn't sound like I am hypo as my PTH got up to the normal range again. I also don't have any of the tingling and have very few muscle cramps. I definitely will have my PTH level checked in two weeks to make sure it is still normal. My magnesium level was also normal the last time I had it checked. I do supplement with it to help absorb the calcium. Magnesium citrate gives me diarrhea so I use mag glycinate.

I take calcium citrate as my system seems to tolerate it best. Unfortunately, that doesn't mean I'm absorbing it that well. I tried Ortho Molecular Reacted Calcium as my DO said it is better absorbed and I could take less of it. I tolerated the calcium citrate better. I heard calcium carbonate is absorbed even worse than the citrate.

I am hoping I can have another dexa scan to see if my osteopenia improved. That would also indicate if my parathyroid gland is working.

Unfortunately I cannot afford either the trip to see Dr. Norman or the visit. I live in MN and my insurance would not cover him. Even the trip would be a major expense to me. Our finances are very limited. I'll see how my calcium, vitamin D and PTH come out before I look for another endo.

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    • Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
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    • Welcome, Josh! You have two choices: 1) go back on gluten and get tested.  This will help confirm if you have celiac disease or not.  Some 10% of celiacs are seronegative.  You should confirm if you had the complete celiac panel.  I personally am only positive on the DGP IgA, even on follow-up Testing.  Okay, if you have NCGI, the treatment is the same.  But with a celiac disease diagnosis, that puts you at risk for other autoimmune disorders or cancer (though rare).    You could have both IBD (Crohn’s or Ulcerative Colitis) and celiac disease or maybe Hashimoto’s Thyroiditis.  Knowing this, your doctors can be on the alert for future problems.  It can also help you adhere to a LIFELONG gluten free diet because you will have NO DOUBT.  The endoscopy also provides an initial baseline.  2) stay gluten free for life.  Learn all that you can about cross contamination, avoid eating out (it is like Russian Roulette).  Eat fewer processed foods.  Learn to read labels.  Keep a food and symptom diary to identify other food intolerances.  Read our Newbie 101 advice pinned at the top of the “Coping”section of the forum.  Healing can take months to YEARS.   I have a formal diagnosis (four years ago) and my only known symptom was anemia.  No GI issues.   My hubby went gluten-free 16 years ago per the poor advice of two medical doctors.  We both know odds are that he has celiac disease, but we can not afford for him to be sick for a three month gluten challenge.    He will tell you that I get way more support from medical, family and friends.  We were easily able to get our daughter tested because of my diagnosis.  Easy for me to get a bone scan confirming osteoporosis, etc.   Only you can decide what is best in your case.  I wish you well.  
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