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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.

Gluten Free 4 Months And Dealing With Fatigue
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Hi all -

Today marks 4 months for me being totally gluten free. I do not go out to eat at all. I cook all my own food from scratch instead and I am feeling much better. My DH has cleared significantly (thanks goodness) and some other symptoms have diminished as well. But for the last two weeks, I have been SO tired, especially in the afternoons. I have been chalking it up to the severe lack of sleep I had for months when the DH was making everything impossible. But I am wondering if it might be something more? Or maybe just part and parcel of the healing process? Any ideas would be appreciated. Just wondering what else I should be watching out for...

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Have your nutrient levels been checked and checked again?  Maybe you are not taking supplements, or they aren't being absorbed well enough.  You may have other food intolerances, or maybe your body is just really working hard on recovery.  Have you had any higher highs, yet?  All of these things were going on with me at 4 months gluten free.  Also, I believe I dealt with cross contamination.

 

So, glad the DH has improved!  Perhaps that shows that you are managing to stay gluten free.

 

How long were you ailing or showing symptoms?  I was 30 years.  I am currently 18 months gluten free and feeling much better.  I needed to work on all of the above ideas  and more first, though.

 

D

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I had my nutrients checked and everything looked really good. My B12 was ever so slightly low. But maybe I should check again? I am taking supplements, including a chewable B12 (gluten free).

 

I have had some higher highs! (If I am understanding you correctly...) I feel pretty great sometimes, and good most days. The bad days are fewer and farther between. Anxiety has diminished greatly - for that I am so grateful. I have been very strict with my food intake. This was hard at first, as I decided that I could no longer go out to eat and that all processed food was off limits. It has now become "normal" that I cook everything from scratch and bring food with me everywhere. Luckily I like to cook. I have since eased up a bit and allowed myself to visit a gluten free bakery in town - the owner has Celiac and a host of other autoimmune diseases, so I feel confident that she knows how to feed us. Being gluten free is not as hard as low iodine, I think. My S.O. is gluten free, so our house is safe. My sister is also gluten free so I can eat there. And my parents are very supportive, so even though they are not gluten free, they have worked hard to make their kitchen safe for me.

 

As far as how long I was showing symptoms: I was diagnosed with IBS in 2007 - that would come and go over the years, mostly when I was stressed or after a heavy meal. It was never so bad that I thought that something else might be up. I was diagnosed with Generalized Anxiety Disorder sometime around late 2010. The first itchy dot that I now know was the beginning of DH showed up in January of 2010. The itchy dots would come and go from 2010 until the beginning of this year. Then in January of this year the DH exploded. From January to June it spread like wildfire all over my torso. I also started having full blown panic attacks in April of this year - days after day of them. Then I went gluten free June 1st and things have been slowly improving since then. I would say that it wasn't until September that I could definitively say I am getting better. I am so grateful.

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When I'm really tired in the afternoons and feel the overwhelming need for a nap, it usually means that my thyroid isn't functioning well.  Have you ever had it checked?  

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I had mine checked back in July - my TSH was normal. But that was right when I started the low iodine part of my diet. Maybe I should check it again? And is there something besides TSH that should be checked?

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I also suffer from lack of energy, I think mine is coming back slowly .. I have good days and bad days

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The healing process takes time.  Your body is using a lot of energy to do this.  I would not go nuts looking for additional reasons for feeling tired.  Make sure you get good sleep and exercise.  When you have your normal follow up with your Doctor, he can check your thyroid and vitamin levels at that time. 

 

Good luck to you.

 

Colleen

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I have a suggestion: Have the doctor check your FOLATE level (and your Vitamin D too) when he does your blood work.

 

They never check this vitamin level (B9) and it can cause serious fatigue

and it is a quite common form of anemia in celiac. (along with B-12 and iron deficiency)

 

It kept me flagging the first few months until I read about all the things that go haywire with celiac and my doctor

tested me and there it was. Tanked folate. I looked like a genius and he looked like the same deer in the headlights

he always did. :lol: but whenever anyone says they still feel exhausted, I suggest folate.

A few months on prescription strength folic acid, and I was all set.

 

The TSH will not fluctuate that much since July, but make sure he checks for thyroid antibodies as well as free T4 and T3. 

Hang in there. You're doing a great job!

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I also suffer from lack of energy, I think mine is coming back slowly .. I have good days and bad days

 

I think you and I are about on the same timeline! Most mornings I feel ready to get up and go - then by 2pm, major nap attack. :lol:

The healing process takes time.  Your body is using a lot of energy to do this.  I would not go nuts looking for additional reasons for feeling tired.  Make sure you get good sleep and exercise.  When you have your normal follow up with your Doctor, he can check your thyroid and vitamin levels at that time. 

 

Good luck to you.

 

Colleen

Thank you. It makes sense that I would need extra sleep through the healing process. I think I am just so afraid of missing something (again!) that I am hyper sensitive to any little feeling. Reassurance from the community helps a lot. :)

 

I have a suggestion: Have the doctor check your FOLATE level (and your Vitamin D too) when he does your blood work.

 

They never check this vitamin level (B9) and it can cause serious fatigue

and it is a quite common form of anemia in celiac. (along with B-12 and iron deficiency)

 

It kept me flagging the first few months until I read about all the things that go haywire with celiac and my doctor

tested me and there it was. Tanked folate. I looked like a genius and he looked like the same deer in the headlights

he always did. :lol: but whenever anyone says they still feel exhausted, I suggest folate.

A few months on prescription strength folic acid, and I was all set.

 

The TSH will not fluctuate that much since July, but make sure he checks for thyroid antibodies as well as free T4 and T3. 

Hang in there. You're doing a great job!

Oh! I am taking that, I think - my B-12 chewable also has 800 mcg folic acid. (I am assuming folic acid is the same as folate?) My iron was checked in July and it was actually high, and my vitamin D levels were checked in April and they were good too. Ok, I think I am reassured - I will just stay the course until my next checkup.

 

And thanks for telling me I'm doing a good job! I feel like the kid who just got a gold star on her homework!. Seriously, I have been working so hard at this and I am so determined to do whatever it takes - it feels good to have that affirmation. :D

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Well, I liked hearing encouraging words too when I was still in the beginning stages. Many people on here

told me many times "just stay the course--it gets better" "be patient" and I would think "BUT when???!!" lol

 

They were right. Healing happens.

 

Ok, just understand that 800 mcgs of folic acid will not rectify a serious folate deficiency, though--if that is what's causing the fatigue.

 

Next time you have a check-up, you can just ask for the folate test to rule it out.

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That low iodine could be affecting your thyroid function. You need iodine to convert T4 to usable T3 (as I understand it). Did they check you free T3 levels when they checked your TSH? FT3 is the active thyroid hormone and if it is low, or even in the lower half of the normal range, it will affect your energy levels.

 

Hang it there. Sometimes it just takes more time.

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I went to the Dr. Today :) He said You have Celiac you have to be patient!  :) Altho he did take a bunch of blood!! 

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Hi all -

Today marks 4 months for me being totally gluten free. I do not go out to eat at all. I cook all my own food from scratch instead and I am feeling much better. My DH has cleared significantly (thanks goodness) and some other symptoms have diminished as well. But for the last two weeks, I have been SO tired, especially in the afternoons. I have been chalking it up to the severe lack of sleep I had for months when the DH was making everything impossible. But I am wondering if it might be something more? Or maybe just part and parcel of the healing process? Any ideas would be appreciated. Just wondering what else I should be watching out for...

 

Hi Abby, I had the same problem. Someone recommended that I check the protein content of my meals, which were previously veggie, low-protein based, and that has helped. I try to keep away from grains and legumes in the afternoons too. It seems that beans and rice make me feel really sleepy. Someone else also recommended taking a B12 supplement, which has made a really noticeable difference in my energy levels! I hope you get to feeling better soon! 

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 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,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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