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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.

Could Celiac Be Causing My Problems?
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5 posts in this topic

Feeling lost and not sure what to do. I am a 35 year old mom of 5 kids. Growing up I had horrible allergies/sinus issues, severe mood swings and difficulty learning. Diagnosed with Grave's disease 12 years ago and underwent RAI therapy. About 2 years ago I started working out and eating better and lost 30 pounds. Then all of my abdominal problems began. One day I started having severe cramps when trying to pass a bowel movement. I sat on the toilet for most of the day with severe cramping and nothing would come out. When to an Urgent Care.  They performed an Xray which showed my entire colon filled with stool. That was very odd to me because I had a bowel movement every day previously. It was always a small amount though and mushy. The dr. recommended laxatives and an abdominal CT. It came back showing most of my large colon thickened, fluid in abdomin and gall stones. Went on a month of antibiotics and followed up with a colonoscopy. It showed a perfectly healthy colon.  The GI dr. said to use a dose of Miralax every morning and eat a high fiber/grain diet.

Followed what he said to do and my intestional problems continued. I would go 3-4 days between movements and when I did go it was mushy.  Started having severe headaches. They were constant and always in the same area of my head. My brain began to feel foggy.  I had trouble remembering things and felt like I was going crazy. A few months later my family dr ordered an MRI of my head and blood work.  The MRI came back showing a sinus infection (dual maxillary sinus) and one white lesion. My blood work showed borderline low Ferritin, very low Vit D, Potassium low normal, and my Bilirubin was slightly elevated. My Free T4 and T3 were low normal even though I am on a high dose of Synthroid.  Started antibiotics for the sinus and felt a tiny bit better. The constant headaches went away, but my my body does not feel good. I stuggle every day with my stomach hurting after I eat and difficulty going to the bathroom with random bouts of diarrhea. My life feels like I am in a fog. My other symptoms for the past few months have been dizziness, tingling in hands and feet, fatigue, hair loss, hard time concentrating/remembering and anxiety/depression. I have itchy bumps on my scalp and hairline. I tired popping a few but only clear liquid comes out. The weird thing is that I have gained 15 pounds in the last 8 months, but my apptitie has been ravenous and I easily consume 2500-3000 calories a day. I guess that combined with my low thryoid could explain it. 

Should I even consider Celiac to be a cause? My husband has been extremely understanding but I think he is beginning to think it is all in my head. I am considering doing this self ordered online panel. It is $179 and I have my blood drawn at a LabCorp site with the results sent to me. Is it through enough? Thanks so much!

 

Celiac Disease Comprehensive Antibody Profile   Test Details

Includes: Deamidated gliadin antibodies, IgA; Deamidated gliadin antibodies, IgG; Tissue transglutaminase (tTG) IgA; Tissue transglutaminase (tTG) IgG; Endomysial antibodies, IgA; Immunoglobulin A, Qn, Serum This test is also known as: Deamidated Gliadin Endomysial IgA Antibodies Tissue Transglutaminase Total IgA

 

 

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Welcome!  

 

You definitely sound as though you have celiac disease.  I"m sure others who are more savy on forum will post helpful input on the exact tests you need for a proper diagnosis.   Until then, keep eating gluten!  

 

Good luck!

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My son just walked up and asked why I looked so sad.  I feel for you.  I believe you have symptoms you listed, and I hope you will be well.  I know how hard it can be.

 

I love kids.  I want them all to have an energetic mother.  I have 7  children and have lived through about 30 years of foggy fatigue.  Over the years,  I felt as devastatingly tired in the morning as at bedtime.  --I am happy to say that I am better now.  I hope one day you will have that same story to tell to us.

 

Please consider celiac.  You need to be eating gluten for the blood test that you have to be accurate.  I am leaving to someone else to check if all the tests are there.  Sometimes, I know that check some nutrient levels with the antibody tests.  That would be total iron, vitamin D and perhaps others.  Oh, I see that both iron ferritin and vitamin D are low.  Have you supplemented them?

 

I noticed last time I was constipated that dizzy fatigue and lack of energy came with it.  It cleared when my bowels loosened up. If you do have celiac, your body can't get enough nutrients from the food you eat.  That could explain a ferocious appetite.  You might try a probiotic, multi-vitamin and Vitamin B. If these are new to you, you may as well look for a gluten free version, so you don't have to switch if you find out you have celiac.   Find out as soon as possible about the celiac and then you can avoid gluten and  begin to heal.  

 

Take some downtime if and when you can.  Otherwise realize that you need to take one step at a time and try to get better in spite of the challenges.  Give yourself time to recover.  Hopefully, your hubby will feel more supportive as he sees your progress over time.  Mine did.  The children can begin to help with the work if they haven't already.  My oldest daughter fixed dinner when she was only 6.   I directed while lying on the kitchen counter.  We got through.

 

Please get well ***

D

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I've been trying for the past three hours to answer this post but those pesky customers keep coming in and interupting. :lol:

 

Yes, it certainly sounds like celiac to me. It sounds like your doctor has been trying to help you, but like SO MANY doctors, he probably doesn't know much about celiac. You should ask him to do the testing. I'm not sure if those home test things are very reliable. There are several blood tests that can be done, plus the biopsy.

 

If you do choose to get tested you need to keep eating gluten until all testing is done. If an official diagnosis isn't that important to you, you could try going gluten-free and see if your symptoms improve. Either way, read the Newbie 101 thread here. It will teach you so much about being celiac and the gluten-free diet.

 

Let us know if you have any questions, and please let us know what you decide to do about testing.

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Welcome to the board. :)

I have celiac disease and a poorly functioning thyroid, and your symptoms sound very much like mine were. Headaches, constant constipation, stomach aches and bloating, confusion, and hair loss. Based on my own experiences, I think you should get tested for celiac disease.

The panel you listed looks really good. Many doctors will run the same ones for you but I understand wanting to get it done yourself. Don't stop eating gluten until the testing is done or it could affect the accuracy. Most doctors seem to recommend about two slices of bread per day for about two months ( if you were previously gluten-free or gluten light) before testing is done.

It sounds like you need to re-address your thyroid treatment too. Many patents with poor thyroid function find they need their TSH to be close to a 1, and their free T3 and free T4 to be in the 50-75% range of your lab's normal reference range in order to feel well. T4 meds alone (Synthoid) isn't right for everyone either. I tried synthroid for quite a while before giving up on it - I just never felt well and it couldn't get my FT3 above the bottom quarter of my lab's normal range. I needed to switch to natural desiccated thyroid before I felt truly well. I don't know if it was just the extra T3 or if it was the T2, T1, T0, or calcitonin but it worked for me. It got my FT3 to 75% of the normal range, although it did drop my TSH to 0.01 ( appears hyper but I feel fine, and I have been hyper before.

Good luck, let us know how it goes.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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