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Is This Celiac? How Can I Advocate For Myself?
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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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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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