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Is This Celiac? How Can I Advocate For Myself?

5 posts in this topic



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)


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


-can't focus

-need to lie down a lot

-diarrhea, or just having very heavy BMs


-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- 



tTG IgA & IgG


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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