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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.

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Hi everyone.  This is my first time posting although I've been reading some of your posts for a week or so now.  I have a few questions that I hope you can all help me with. 

 

A little catch up on where I've been and where I am currently.  I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well.  Since then some symptoms have stabilized and some have just gotten worse.  For the last 10 years and probably well before then, new issues just keep popping up.  Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms.  I have had days where I would have to run to the bathroom 5 or 6 times a day.  After I would feel so exhausted and hungry to the point that I just can't seem to get full.  This would be followed by about a week of constipation, bloating, gas etc.  I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal.  About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month.  Usually about every 2 weeks.  I've had ultrasounds for that come back normal.  I've been told its hormones, depression, all in my head.  At one point I was in my Drs office in tears because nothing was making sense.  I've also been diagnosed with high levels of fatty enzymes in my liver.  I am only 30 years old, I exercise, eat very healthy.  I rarely have sugars and eat mostly whole foods.  So you can see where all my frustration is.  Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread.  So I cut it out for about a week and I started feeling better. 

 

Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week.  I know I am supposed to continue eating gluten until testing is completed.  I was only off for about 5 days and since then have been eating it just not every day.  I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days.  My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference?  And is it normal to get such a horrible reaction to it only a few days being off?  My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. 

 

I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick.  Have any of you had similar experiences or have any advise on how to get through all this?  Thanks all!

 

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I am sorry that you are feeling unwell!

Here is a link to the University of Chicago's celiac website. Share the test requirements with your doctor:

http://www.cureceliacdisease.org/medical-professionals/guide/factsheets

Keep eating gluten until all testing is complete! It is hard, but it can be done! You can do it! just take one day at a time.

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    • Hello and welcome I don't have celiac. I do have several symptoms in common with you and I do have a problem with gluten, so NCGS for want of a better term.  A celiac response to gluten involves the immune system so there certainly can be a delay between ingestion and the body producing the antibodies. That would correlate with your tongue aching progressively through the week. Some of the weirder symptoms of celiac occur because those antibodies that have identified gluten proteins as a problem then attack different parts of the body, maybe that's the more delayed reaction in your case. Last time I was glutened definitely I noticed some reaction in a few hours but it was a couple of days before I was certain. After effects can last for weeks or months even.  Wheat allergy is the one with the instant response, it's IGE mediated and so you can have an immediate surge in histamines and in extreme cases anaphylaptic reaction. NCGS is less well understood, some dispute it's existince or question if gluten is the cause. The symptoms however are similar to celiac as far as I know and that includes response time.  You've been through a miserable time but your still young and you need to decide whether you want to pursue a diagnosis or not. If you do, then it will require a gluten challenge of probably 6-12 weeks. See the links below for more details.  If you don't I suggest you go strictly gluten free, keep a food diary and see if the improvements you noted before continue. I think you've probably found your answer. Best of luck!   Further reading https://www.celiac.com/gluten-free/announcement/3-frequently-asked-questions-about-celiac-disease/
    • This is why many of us stick to our own "Trusted Brands" of things we know are safe, and only buy stuff with the offical certification for gluten free. NOTE also in the US they do not HAVE to tell you their facility also processes wheat on the label, just if the actual product contains it in the ingredients. But many will just to avoid legal mumbo jumbo if they somehow have CC issues. Saying the facility also contains/processes wheat is just them covering themselves if people get sick from it.
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    • I don't have milk in liquid form any more, so I switched to coconut flavoured milk (rice based) for cereal, really like it. Then I take coffee black which I've also adjusted to. For an occasional treat I'll have a soy latte, tastes a bit nutty but I'm used to it now and it's as much about the visual treat of sitting in a coffee shop with a big milky coffee anyway. The last time I had a real milk latte I got some huge spots a day or so later on my chest and that was the clearest signal that milk and my skin weren't a good mix. What I haven't done is stop eating products that have milk listed as an ingredient. If I do that I lose so many of the nice gluten-free replacements  biscuits ice cream etc. I know I could try and get dairy free, but it's expensive and difficult to find. So maybe I should try doing that and see how I go... It's funny, a few years ago I used to have a 'healthy'  breakfast of porridge, milk, with a big spoon full of wheat bran for fibre which I convinced myself I needed for digestion. I used to feel pleased with myself for having a good start to the day when I subsequently found it was the worst combination of foods I could possibly have devised. I think If I ate that right now I'd explode!
    • I and many others here have been there and sympathise! Keep on keepin' on, it won't be long now before you can start feeling better. In the meantime, if there's a cheesecake, pastry etc that you want to say goodbye to, now's the time...
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