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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?  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
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CoolCat1

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I lost weight,had anemia for months, diarrhea/bloating for years and finally had a biopsy in July. I have been on sick leave from May till this month.I started working half time mornings after much flack/opposition (I was working afternoons teaching for years and my principal didn't want to let me change to mornings until I got my federation to help me). I am feeling so tired I'm wondering if my iron level is way down again. In April/ May, I got 13 iron injections. By the time I saw my GI (August)he told me my iron level was now low normal. I find that odd since I should have been higher. Now, I'm working again and I'm so tired in the afternoons. The school board said they would only have me work mornings until May. I will also be getting another job evaluation done. This is also stressful to me. I am dreading that they may force me to go back to afternoons or transfer to another school. This too will be stressful. I have only one more year till I can retire after this year. There are still other stresses...my husband's depression, environmental allergies, my teenage kids etc. Will it do me any good to go back to the GI or will he just say I'm tired because my body isn't absorbing iron and forget about it? I've been thinking I should go to the head of Human Resources and ask to be kept on mornings. :unsure:

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CoolCat.

Were you diagnosed with celiac disease? If you have a definite diagnosis then

I think your workplace would have to accomadate you, there is something

about that in the American Disabilities Act about that. Can someone

help me out here?

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I think we need more info. Do you have celiac? Are you gluten-free? Have you considered possible bacterial overgrowth and tried a probiotic? If you weren't diagnosed as celaic and haven't gone gluten-free, have you considered going gluten-free anyway?

If you have been diagnosed and are gluten-free, I know that two months after my diagnosis I was still physically incapable of returning to work. It was 4-5 months before I could even do a full day.

WARNING: I am not a lawyer or ADA expert. If you have a definite diagnosis, the ADA might help as far as transferring to a.m. teaching as that might be seen as a reasonable accommodation. It won't help if somebody just too sick to function.

Hang in there and keep trying. You need that one more year.

richard

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Yes I was told during my Endoscopy on June 28 that I had celiac disease and when I went to my office visit on Aug. 4 ths GI told me my small intestine was severely damaged with completely flattened villi and no ridges. I have been gluten-free since June 28 with a few errors. I had a medicial certificate from my doctor saying I have celiac disease and I had a severely damaged intestine and that I needed a work change because of my physical condition and also stress. He said he couldn't definitely sayI needed to work mornings because of law suits relating stress to celiac disease. I made a deal to stay mornings until May 05 with the help of my union. There was no way I wanted a transfer and luckily there wasn't one available. I guess I'm worried if they tell me I need to go to the afternoons in June and stay there the following year and I just don't know if I could cope with the stress. Last year's teaching was just awful with me having anemia, fatigue,stress from my class, which had at least half of them with emotional problems/ADHD etc. and my husband's depression. I also couldn't sleep because of bloating and I'm still having problems with sleeping and am now taking half a sleeping pill at night. Labour laws in Ontario, Canada say I should be accomodated but I hesitant to make waves because of the control freak principal I work for.

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Dear CoolCat,

I don't know anything about Canada for which I'm sorry, but do you have anything

like Social Security Disability for which you could apply? I know it is hard to get in the USA, although some people seem to get it. The fact that you are under so much

stress and you have a cooperative physician might help. Is there anyway that

they could accomadate you by changing to another job, perhaps behind a desk

to get you through the year. I know how a controlling boss can be, I still have nightmares about mine and I haven't been around her for several years. Please

let us know how you are doing.

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Thanks for trying to help. I doubt if I can get Long Term Disability because my GI said that I could be better in a matter of weeks to months. I have another biopsy scheduled in February. I suppose I could always take sick days but if they occur more than 3 days I would need a doctor's certificate. I guess I should take another blood test to see if my iron is lower. My allergies are bad too right now. Could it be allergies that make me so sleepy? Will allergies get better once I'm healed up? lovegro, I think I do need more than up to May next year. I guess I better get some more medical evidence first before I see the head of Human Resources. He should be able to overide what my control freak principal wants.

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Oh yes, allergies can definitely make you sleepy.

They may or may not improve on a gluten-free diet - depends on what you're allergic to.

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Thanks, Tiffany. It seems as if I'm better today but my allergies(environmental: grasses,pollens) are better today and I'm not at work either. I guess I'll see tomorrow with increased stress whether that's the problem. I think I'll see how tired I am this week and if its bad I'll phone my gastrologist up and ask to see him.

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 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, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
    • I am 33 and just diagnosed with celiac in July 2017. I am gluten free but still suffering from costocondritis and stomach acid issues. I am also dealing with some neurological things like pins and needles in my left shoulder blade that come and go. No deficiancies right now that we know of othwr than vitamin D which I have a prescription for. My symptoms were not bothersome until right after my first child and then everything fell apart. 
    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
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