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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.

Is This Celiac? How Can I Advocate For Myself?
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5 posts in this topic

Hello,

 

I've been so distraught about all this for the past couple months, and I don't know where to turn/how to get the help I need. I am female, 22 years old, and live in Ontario.

 

For the past couple of years, I've had general crappy feeling issues - regular headaches, light-headed, almost daily headaches, unsettled stomach, constipation, diarrhea. After suffering, I decided to go to the doctor and was told I had IBS and that there wasn't really much to be done. I think I wasn't taken as seriously as I have a history of anxiety/depression, and think my issues were chalked up to nothing more than stress.

 

Several months ago, I began having a lot of pains in my chest and upper stomach that were sharp and pulsing, then disappeared. After going to three different doctors, I was finally tested for h. pylori, and the results came back negative. I was told to take the h-pac (8 pills a day of antibiotics and acid meds I believe?). While it helped, I still had symptoms and was put on a PPI. I was still feeling incredibly weak, light-headed, foggy, exhausted, and asked to have a blood test which my physician reluctantly agreed to. She told me if there were any issues, that she would call, otherwise, come back in a month.

 

A month later (now), things had not improved, and I went back to see her. At this point, I am experiencing the following:

 

-headache (almost daily)

-nausea

-extreme fatigue (even with sleeping 8 hours a day)

-light-headed

-can't focus

-need to lie down a lot

-diarrhea, or just having very heavy BMs

-constipation

-tingling in my left hand that comes and goes

-hard to explain, but when I close my eyes, my brain feels weird

 

My blood test from beginning of October showed (don't have exact numbers, I didn't get my own copy):

-very low iron, hemoglobin

-very low vitamin B12

 

I've been crying a lot because I feel so hopeless and trapped. I was also so angry that I had lived a month with such low levels of iron and B12 considering I've been feeling like a zombie all month and she forgot to call with my positive results.

 

Does it seem possible that I have Celiac? What are the best ways to know for sure?

 

My doctor said she's going to refer me to a GI for an endoscopy, but that process is going to take months. Is there a way I could speed this up? Would going to my ER be an option? I don't know how much longer I can handle these symptoms/constantly feeling awful.

 

Also, has anyone else experienced a link between H. pylori and Celiac? I have read things about Celiac being started by some kind of event/infection that really exacerbated symptoms? 

 

Any advice/support/information or places to go for support would be so appreciated.

 

I'm barely an adult and facing this wall of daily symptoms has really taken a toll on me.

 

 

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Ask your doctor to run a full Celiac Panel while you are waiting for the GI appt- 

 

DGP IgA & IgG

tTG IgA & IgG

EMA IgA

Total Serum IGA

 

Get a copy of your labs. You can post them here and we can take a look with you.

 

You must be eating Gluten in order to be evaluated for celiac disease so don't go on a gluten-free diet until you are done with everything.

 

Keep the referral to the GI doctor since you said it takes a long time to get an appt and you are only starting to investigate the cause of your symptoms.

 

Good luck with everything!

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Take a natural and quality B12 sublingual supplement and an iron supplement and get tested for celiac as soon as possible.  A shortage of those nutrients can cause fatigue, weakness, and foggy thinking.  I know from painful experience.  Was your positive test result for celiac?

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Those are definitely celiac symptoms...If you are finding it tough to get tested, I've heard it's difficult out east, you could always try a Biocard home test. It is the tTG IgA tests and total serum IgA. If you get a positive result, perhaps you could bring that to the doctor to speed thing along?

 

You might want to get your thyroid checked too. My hypothyroidism kicked in around your age - the fatigue, constipation and light headedness could be due to that as it slows your metabolism right down.  The tests for that are TSH (should be close to a 1 regardless of the lab range), Free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

How is your blood pressure? Low blood pressure will cause dizziness too. Hypoglycemia (common in celiacs) can cause that too.

 

Get copies of all lab tests and feel free to come back here for help with them - there are some smart people around here.

 

Good luck.

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Scary, i have the dizziness, shortness of breath, headaches, brain fog as well, forget minor things as well, all blood tests have shown nothing extra ordinary, but last week, i was advised to check my vitamin b12 and iron as well, earlier blood tets did not test for this, i have a feeling, my levels are currently low, i had some gluten free cornflakes for breakfast today and felt like crap hours later, think i will stick to unprocessed food, safer this way

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    • Thank you, again, for the support and help! The suggestion of sleep and lots of water and discussion the next day seemed to help a lot. 
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Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems. the gluten free works site also has a great article on this topic. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer. I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient. because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more. ***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease. Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ good luck on your continued journey. 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,
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