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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.

Many Questions On Symptoms
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4 posts in this topic

Hi all, I am so glad to have found this site!

I have lots of questions regarding Celiac Disease. One of my doctors thinks that I have celiac, but I have some weird symptoms...

1) about 2 years ago I started having loose stools (floating, going more than 2 times a day). I have seen on the board and beyond that this is common with Celiacs. I always thought it was because I was a vegetarian for 15 years. So, I went off gluten (or thought I did, but was eating spelt) for a few weeks, then completely gluten-free for 3 more weeks, and that symptom has improved. Good deal.

2) 10 Months ago I got sick. Not too sure what got me. My prostate gland became infected/inflamed. As a fellow of 34 years old, very active, this is not all that common. It took 3 months before a UR actually checked the prostate (a story in itself!). Along with the pain came horrible sharp pains in my lower left and right abdomen (I see that celiacs get this) and frequent urination. I noticed through searching this site that some celiacs have had issues with bladder and urogenital problems, and they were directly related to the celiac disease. Has anyone out there had problems with the prostate gland due to celiacs? Since going gluten-free I have seen improvement in the symptoms, but it also has been a long time since those symptoms started, so I am unsure whether going gluten-free has helped or if it is due to all the time that has passed.

3) About 5 months (and after 1.5 months of antibiotics) of the prostate and abdominal pains (so bad that I could barely walk or lift more than 2 pounds!!), I began to experience severe pain in the left sacroiliac joint, that extended down to the bottom of my left foot. I was told by a doc to take 800mg of IB 4 times a day, which I did for about 2 months (lessened the dosage as time continued). Since the SI pain kicked in in June, the pain has subsided some, helped along by swimming and walking, and maybe going gluten-free! I see that some of you have experienced SI/Tailbone pain just like me. Since I am not sure whether I have celiac disease or not, I am wondering how common it is to have the pains with celiac disease.

4) I have been gluten-free for over 3 weeks (3weeks before that I was only taking in gluten via spelt), and then I got my blood tested for celiac disease. Is it true that if I was already gluten-free then it would throw off the test, resulting in a false negative?

5) When I origionally got sick, I lost a lot of weight, around 20 pounds. Has anyone else lost this much? I was skinny to begin with, so... the hematologist that I have seen (just a few days ago) said that there may be a few things going on, such as an anemia (which can happen with celiac disease), but I didn't show to be having celiac disease with the blood results that were taken before I went to see him. But I do have lots of celiac disease symptoms. The results of his blood tests are due in 2 weeks.

6) skin rash on left ankle. was there for 8 years, only in summer or warm weather. last month, after the first visit with the clinical ecologist, i was told to get off gluten and use lamisil. the rash went away after 1.5 weeks. anyone else have this rash?

So what this all boils down to is: I have seen 13 Doctors now. My UR claims that my prostate is normal size now (was only inflamed on the left side). He believes that my condition is caused by an intolerance to a food or 2. I am in the process of figuring that out now. But since he is unsure, I am seeking advice on symptoms from anyone else who has celiac disease. My symptoms have all started to get better since I have been gluten-free. But celiac disease is still up in the air.

I had a CT scan in March that revealed nothing. MRI of Lumbar (not pelvis, the insurance company would not approve) revealed nothing as well (aside from a bulding disc).

I know that some autoimmune conditions can cause nerve inflammation, so I am wondering if it is possible that my SI pain/prostate pain is a result of nerve inflammation caused by untreated Celiac Disease.

Wow, that was a lot, but I needed to get it all out at once. I apologize for such a winded post that contains several questions, but I have the feeling I will learn more from the posters here than I can from my doctors, who seem to be going in circles.

Thanks very much in advance!!

John

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Hi John and welcome to the site!! As a female I can't answer all of your questions, but you have diagnosed yourself via the diet challenge as celiac disease, or at least you for sure have problems with gluten. I haven't had any of the bloodwork or biopsies or anything else done - my gp put me on the gluten-free diet nine years ago for bad bad bad diarrhea, and that stopped that problems so the dx from him was celiac disease. It's called the diet challenge and is a viable dx tool. Since you have been gluten-free, it will skew the results and probably give a false negative.

Your symptoms are consistant with celiac disease. celiac disease is also a malabsorption disease, so the body will have other problems besides digestive. It's the malabsorption of fats that causes the floating, frothy stinky D. Nerve problems are a biggie, so it that overwhelming fatigue that I liken to swimming upstream in a molasses river in Jan. Then there's the depression and irritability along with the other stuff for good measure. I hope this helps some, and feel free to ask any questions here. None too weird or silly!

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4)  I have been gluten-free for over 3 weeks (3weeks before that I was only taking in gluten via spelt), and then I got my blood tested for celiac disease.  Is it true that if I was already gluten-free then it would throw off the test, resulting in a false negative?

Some of us always show up negative on blood tests, even when consuming. I was tested repeatedly for over 5 years and never showed up.

6) skin rash on left ankle.  was there for 8 years, only in summer or warm weather.  last month, after the first visit with the clinical ecologist, i was told to get off gluten and use lamisil.  the rash went away after 1.5 weeks.  anyone else have this rash?

Sounds like you got a positive diagnosis of DH here, that doc was smart and gave good advice.

I know that some autoimmune conditions can cause nerve inflammation, so I am wondering if it is possible that my SI pain/prostate pain is a result of nerve inflammation caused by untreated Celiac Disease.

That is very possible.

Wow, that was a lot, but I needed to get it all out at once.  I apologize for such a winded post that contains several questions, but I have the feeling I will learn more from the posters here than I can from my doctors, who seem to be going in circles.

I hope you get relief soon. Get back on the gluten-free bandwagon.

<{POST_SNAPBACK}>

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Hi John--All of our stories are similiar and different at the same time. We all seem to have secondary problems because of the gluten. I have neuropathy and carpal tunnel in my arms and small fiber neuropathy in my legs due to malabsorption. I was the celiac that gained weight--my body fought to survive by adding weight--I lost 60# when I went gluten-free. I suffered chemical embalances, panic attacks, agoraphobia--you name it and now--I dont take anything for panic and its very rare that I have any panic. Somethings never go away--I am still claustrophobic--I developed new intolerances--very limited on soy and corn. Feel free to email me. Deb

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    • 1. I think the pain is more diffused than on one side or the other.  2. Sacroiliac joint sounds familiar to me, from when I was doing pt? I think this was something where one side was lower than the other. She would correct it, but it wouldn't stay put for long.  3. I haven't had any scans in ages!  4. Every pair of pants I have are elastic or tie right now! I'm at my mid weight. I guess I've got fat, mid and skinny clothes, lol. I'm losing a bit of weight here and there because one of my meds causes me to have a lower appetite. 5. Are you getting any help from the chiropractor? 6. Thanks so much for this food for thought. I do so hope you find an answer to your issues asap. I hate stuff like this that is seemingly so ambiguous. Much easier to just have kidney stones and get them over with, lol.
    • Many celiacs can eat 10- 20 mg of gluten per day (10-20 ppm in one kilogram of food) without adverse effects.  That is roughly equivalent to 1/16-1/8 teaspoon flour.  More than a trace, but still a small amount.  Some of us cannot handle that amount.
    • Everything with the gluten-free certification must be below 20ppm in a lab test. THAT is much much less then a crumb. Toasters are cheap just get a new ones. If you eat whole foods only your chances are much much less of getting CCed. We normally suggest no gluten-free processed foods (dough, mixes, chips, crackers. breads etc) for the first few months only eating whole foods to boost your healing also remove dairy and oats as they can be hard to process with the initial damage (Diary requires the enzyme lactase which is produced by the tips of the villi in the intestines which are the most damaged).   To make it much easier clean our your microwave really goods, put down some paper towels in the bottom when you use it and get some nordicware microwave cook ware, a new mixing bowl. measure cup, spatula, and some basic eating and cooking utensils and you can start fixing stuff that way starting off without worry. I love steamed veggies, omelettes, etc done this way so tender and easy to digest.  I might also suggest using freezer/butcher paper for a clean prep surface starting off also makes clean up a breeze since you just trash it when done.  You can get the rest of you appliances, pots, pans and everything else changed over later. And this makes it simple to get started....PS crockpot liners are a life saver and making huge pots of stew, or roast in them from raw ingredients is super simple and you can eat on it for days.
    • Hi again Victoria  - I've just read your other comment about your insides feeling like they might slip out!  Poor you!  But yes - I can identify with that.  I actually get that exact feeling when I get a UTI - are you sure you haven't got a UTI?  x
    • Third trimester pain is a good way of describing it!  I know someone with another gastrointestinal complaint - diverticulitis - which causes this sensation too - so it could purely be down to our gut. What I would say is what side is you pain on? Is it pretty diffuse or is it on the left or right side?  For me, it was the left side, rather as if when I was pregnant a baby was standing on my hip/groin area.  As it was on the left a sigmoidscopy was indicated to make doubly sure nothing else was going on, after an internal pelvic scan u/s ruled out other problems. (I note you have had a hysterectomy but have you had any of the above scans recently? - might be worth doing to give you peace of mind). If you want to find out if it is your sacroiliac joint causing you problems, a physio or chiropractor will be able to put their finger on it (literally).  My left sacroiliac joint is very tender now but before I was shown where the joint actually was, I wouldn't have known  otherwise as the pain refers in a great part to my groin.   I nearly shot through the roof when my chiropractor touched the sacroiliac area.   The cure for that is rest and the right type of exercise, not carrying heavy loads, wearing comfortable supportive shoes etc. Another thing that pelvic pain can be caused by is pelvic congestion.   I'm not sure if this would affect someone who has had a hysterectomy. One radiographer told me I had a lot of veins (like internal varicose veins) which might be causing me pain, although when the gynaecologist looked at me she said they were normal.   Personally, I think in my case it is a mix of sacroiliac issues, bloating and possibly pelvic congestion!  A bit of everything in the mix! One thing I cannot do any more is wear tight waistbands or other tight clothes.  For whatever reason this makes things so much worse.  If you are wearing tight waistbands, definitely give that a miss. Sorry - this is a bit of a ramble, but it might throw some light on your situation.
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