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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.

What The Heck Do I Do Now?
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30 posts in this topic

Hi all!

I was diagnosed back in November with celiacs. I have been very diligent since the day my blood was drawn to eat 100% gluten free. My diagnosis didnt come as a shock since I have a family history of it but at the same time it was frustrating because it took 3 years to be diagnosed. I went to the doctor constantly because of joint and bone pain only to be told "here's some painkillers". I just kept going because there was obviously something wrong and I am not a fan of narcotics (my mom is an addict) and didn't want to take a pill to mask symptoms. Finally found a doctor who wanted to test for it and bingo super positive blood test. We decided to skip the biopsy since scheduling one would have taken over a month and if I felt better on the diet then obviously it was an accurate test. Now that I am gluten free I can tell you I didn't realize how constipated I was all the time and I now have no headaches and it seems like I will finally have a regular cycle. So lots of positive things going on but.....

I'm still tired all the time and not sleeping well. I went to the doctor and yet again I get the take a pill speech. They think I need an antidepressant because I'm severely depressed I had to demand they run blood work to make sure nothing else is going on. I just don't understand how they won't even consider that I may deficient on something. I am currently on a prenatal (not because I'm pregnant but because we were actively trying, taking a break right now) and 5000 units of vitamin D because my levels were in the toilet they said I can lower it to 2000 units since they were normal the last time but it's January in Minnesota no thanks.

I spoke with the nurse today and she said all my labs were fairly normal but what the heck does that mean and I will get a letter in the mail. I didn't want to start supplementing myself without knowing where I was at first but they aren't helping me figure things out and I'm not depressed (it actually makes me angry because depression is a very serious disease and people who actually are needing help don't get it)

Does anyone have any advice for me? I'm feeling so lost with this and I have my husband angry with me because I don't want to fix myself and get help...he's a take a pill person ugh!!!!!

Thanks in advance!

Jess

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Hang in there, you've only just begun your battle! It can take months to iron everything out, and for some people, longer. I have had lifelong problems with depression and have used tons of anti-depressants. Not one of them helped me as much as going gluten free and the following supplements (I did both at the same time so I can't say for certain which has had the greatest impact):

1. A really good daily multivitamin - MAKE SURE IT'S GLUTEN FREE. I use Eclectic Institute's 'Vital Force Caps' at the recommendation of the doc who dx'd me. It's not cheap but despite being really poor right now I decided I was going to take whatever this doc advised, since after 10 years of illness with no help from numerous docs, he pinpointed gluten. He's my hero :).

2. Udo's Oil 3-6-9 Blend - also recommended by my hero. It's an oil that's a perfect ratio blend of omega-3 and omega-6 oils. I take 1 tbsp a day, added to food. I think this one has had a big impact on my depression - speculation of course. But omega-3 deficiencies are really common and can lead to depression amongst numerous other things.

I was on those for about 2 months when I discovered my seasonal effective disorder had disappeared...and I can honestly say for the first time in my adult life that I am not depressed! For me that's a big WOW.

At 2 months in, you are at the stage where many start to become extra sensitive to even the smallest amount of gluten, so make sure your supplements and little things like spices are all gluten-free (McCormicks single ingredients ones were recommended to me here). Be very wary about cross-contamination in your home and remember to check Every Single Ingredient even if it seems gluten would never be present (learn from my mistake: I was baking gluten-free muffins without realizing the baking soda had been processes in a facility alongside wheat. Had I read the box I would have spared myself 2 weeks of feeling lousy and not knowing why.) Know that it's very common to have multiple sensitivities aside from gluten - I for example have issues with oats (even gluten-free oats - and that's a common one), corn, sugars & gums like guar gum), dairy. There's a good chance that gluten is not the only thing messing with you physically and emotionally.

As I said before you are at the earliest stage of the battle. I would continue to try to avoid medication while you are sorting everything out, there's a good chance you don't need it! Do some research and educate your husband (tell him if he wants his opinion noted, it needs to be an informed one!)

And find another doctor! Preferably one who understands celiac, it would make a world of difference. Try googling for your local Celiac support group, and call or email for a recommendation for a new doc. You really need a doc on your side to help figure out your deficiencies and get your health back on track.

Good luck!

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PS. I would call your doc office and get your test results sent to you (you may have to sign something to get them). When you have them you can research the values and find out for yourself if you are on the lower end of the spectrum for any of them - sometimes just slight deficiencies can cause symptoms. Of course, you do need to be cautious that you don't overdo anything in your zeal to heal yourself. A great reference for supplements can be found at www.ods.od.nih.gov - you can type a vitamin into the search field and find documentation on safe limits and the best forms of a vitamin to take.

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I didn't recover from the fatigue, sleep problems, and in my case bipolar illness until I started taking high potency probiotics, fish oil, and a complete vitamin/mineral/trace element supplement. The one I take is called EmpowerPlus from http://www.truehope.com.

I'd strongly recommend straight fish oil rather than omega3-6-9 blend. The American diet is far too heavy in omega-6 because of all the vegetable oil and poor quality meat we eat and the last thing you need is to deliberately add more. Correcting the omega-3 deficiency helps, but getting the omega-3:omega-6 ratio right across your whole diet helps even more because it lowers inflammation. Try to lower your consumption of omega-6 fatty acids by avoiding fries, chips, and processed foods heavy in vegetable oils. A little olive oil is OK.

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Thanks for the supplement tips I will be making a trip to target this weekend to add a few things and I'm suppose to get a letter from the doctor with her report. We live in a very rural area so finding a doctor who understand celiacs is nearly impossible so I need to advocate for myself. My house is completely gluten free, everything has been checked and rechecked including looking everything up that doesn't say gluten free on it. I eat a very healthy diet and consider myself a fairly fit person. I work out on a regular basis and am very active so they ignore me when I same I'm exhausted. Apparently you can't be exhausted and still take your kid roller skating sorry that I push my limits on a regular basis because that is the person I am.

I guess I keep trekking forward lol!

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As well as the supplements, it may simply take more time. You've only been gluten-free for a couple months. If you had a positive biopsy it may take considerably longer to recover. There was a thread some time back on how long people took to get back to feeling normal and the answers were anything from two weeks to two years. Celiac can do a LOT of damage.

I forgot - another supplement to look for is sublingual B12. You want methylcobalamin, the form your body uses. We all seem to be very poor at absorbing B12 from pills and the sublingual can help.

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I chose to skip the biopsy because my oldest had an inconclusive one a few years ago and his blood test came back positive this time (he's checked every 3 years as part of his annual screening). My doctor was completely comfortable diagnosing off blood test alone in combination with symptoms and the fact that I have 5 first cousins with it lol. I could even get in to see someone until February to do the biopsy so I wasn't wasting the time I wanted some relief as soon as possible and my bone pain is significantly better.

So at least point I should add b12, fish oil, and a good multivitamin.....would you recommend a multivitamin over a prenatal?

You guys have been so much help!

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I'd recommend a multivitamin with chelated minerals and trace elements as well as vitamins. I'd look for something really complete like Solgar Omnium or Solgar VM-2000. Metagenics makes good multiples too. The stuff I'm taking has pretty much everything but the kitchen sink! You need trace elements and minerals as well as vitamins to rebuild enzymes and get going again. Remember, you have not been absorbing your food properly for years. (Not to mention that a lot of the food we grow now on depleted soil isn't very nutritious.)

Obviously you want to be on a prenatal once you go back to TTC. Seems like it's safest. Do pick up a high-quality chelated one like Solgar or Metagenics though.

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Try to get the supplements figured out without anti-depressants first. I had a terrible time with depression for years and was on different anti-depressants but all they do is make you not feel what you actually need to feel and need to deal with. For me, I had to get my supplements to a point that my body was functioning properly. I too was low in various areas but the docs really were not too helpful with the vit side. Aside from writing a prescript for calcium and a prenatal (also not pg), their answer was meds. Go natural. The vit D should help alot. Make sure you take a look at your labs......iron deficiencies are very common among celiacs and if your iron is even teetering on the low level it can cause a great deal of fatigue and nausea.

In my case, I linked every one of my symptoms to a vit and by putting them in my diet I was able to correct so many issues. Docs would have been throwing me more prescripts for meds.

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Sounds like your blood work wasn't conclusive. I would be asking for the results and / or re-testing depending on how old the results are. The iron range for "normal" is huge. What's considered the low end of normal is plenty low enough to have most of the symptoms of anaemia. That's just one example. Vitamins, minerals, trace and amino acids should be looked at.

Other options for testing are: thyroid & hormones, blood sugar, blood pressure and things like serotonin. All of those things can make you feel tired or depressed, other than vitamin deficiencies, and all are relatively common in people with celiac disease. Even if you're out of normal range with any of those things, it can have pretty big effects on the way you feel. I would test them just to be sure if you can't find anything wrong with your blood work.

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Another thing that is driving me crazy is my hair is falling out horribly and it used to be curly now it's straight and stringy....so sad =(

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Another thing that is driving me crazy is my hair is falling out horribly and it used to be curly now it's straight and stringy....so sad =(

That can be malnutrition but it is also a hypothyroid symptoms. So are your fatigue and depression now that Kjas has me thinking about it.

Here is an "official" list of hypothyroid symptoms.

http://www.mayoclinic.com/health/hypothyroidism/DS00353/DSECTION=symptoms

And here is a much more inclusive list from a woman who had to become a thyroid expert in order to regain her health.

http://www.stopthethyroidmadness.com/long-and-pathetic/

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Just spoke with the nurse (read the letter to me that the doctor is sending) she said my iron level was on the low side but doesn't think it's causing my symptoms. Vitamin d and b12 were both in the normal range. Thryoid levels were also normal. At this time she recommends that I consider an antidepressant as she feels that is what's causing my fatigue.....sigh I'm not going that route.

I started taking melatonin a couple nights ago also picked up fish oil, b12, and calcium for good measure lol. I'm going to be doing aloe Vera juice with this as it makes my skin feel better.

As soon as I get my actual test results I will double check everything but geez they sure don't want to help me unless it's to take an antidepressant.

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I HATE that. I flatly refused antidepressants last summer when I knew I was still hypothyroid even after they adjusted my meds. Damn pill-pushing doctors.

What was your TSH? The test is often misinterpreted. If it's over 3.0 and you have hypothyroid symptoms you might ask for an endocrinologist referral.

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I don't know what the actual levels are, I will let you know when I receive them in the mail. I'm so sick of them ignoring me. I have another doctor I'm going to try who I guess is really a believer of all natural so I'm hoping he can help.

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The other thing to consider is that you might have more food intolerances. Dairy and nightshades are making me tired right now. It's a 1-2 days delayed reaction that continues for 3-4 days after I eat the problem food.

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Are you supplementing with zinc by chance? Too much zinc can make your hair fall out, it was happening to me till I found that out and scaled back my dosage.

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Just spoke with the nurse (read the letter to me that the doctor is sending) she said my iron level was on the low side but doesn't think it's causing my symptoms. Vitamin d and b12 were both in the normal range. Thryoid levels were also normal. At this time she recommends that I consider an antidepressant as she feels that is what's causing my fatigue.....sigh I'm not going that route.

I started taking melatonin a couple nights ago also picked up fish oil, b12, and calcium for good measure lol. I'm going to be doing aloe Vera juice with this as it makes my skin feel better.

As soon as I get my actual test results I will double check everything but geez they sure don't want to help me unless it's to take an antidepressant.

Good on you! You are on the right track!!

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Having a copy of your test scores helps a lot. Being on the low side for iron can give you symptoms. It's sad, but Dr.s aren't trained in nutrition. It's an elective course, so they aren't much help in guiding you on supplements.

Their training is more chemistry related. They look for what chemicals(Rxs) will ease a symptom. A lot of them don't look for the CAUSE of the symptom. :(

In general, I think most people benefit from fish oil, D3, a good multi with Bs, and a calcium suppliement? Add in iron, if needed, and Glusosamine Chondroitin is wonderful for your joints if you have any aches and pains.

Once you heal more, you may not need supplements, but at first it's a good idea to take them.

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You've already gotten good advice but I'd like to reiterate the "find another doctor" part.

If you aren't comfortable with your doctor and feel that he or she isn't listening to you, it's time to look for another.

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No zinc and I'm seeing yet another dr sometime this week. Unfortunately my choices are pretty limited as we live in a small community and I can't go to a specialist without a referral, every doctor I've seen wont give me one because they don't feel I need it. They treat me like a hypochondriac...sorry I want to be healthy.

I watch what I eat very closely, only being a few months in I'm sure it's going to get better....eventually.

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Very glad I listened to everyone on this board and did not go right for an antidepressant.

I took a pregnancy test today and was SHOCKED to see 2 lines! No wonder I'm tired lol my body is healing and growing a human.

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Congratulations!!! :)

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I took a pregnancy test today and was SHOCKED to see 2 lines! No wonder I'm tired lol my body is healing and growing a human.

Congratulations! I hope it goes smoothly. I guess it's back to that prenatal vitamin, eh? :lol:

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I never changed it lol! This was definitely not an intentional thing lol

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      I agree with everything cyclinglady said. You need to be tested BEFORE you go gluten free!!!!!! I was just reading an interview with Joseph A. Murray, MD who is head of the celiac dept. at Mayo Clinic & one of the top celiac experts & researchers in the world. He talks about this subject of going gluten free before testing many times during this interview. It's interesting reading. Please take a little time to read it all the way through. http://www.medscape.com/viewarticle/820397_3
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