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I've been struggling with a lot of symptoms for over 7 years now. I've gone on many wild goose chases to get a diagnoses, but I always seem to wind up with negative test results, or an answer that doesn't account for most of my symptoms.

 

Most of my symptoms first started when I was in my sophomore year of high school (I am 23 years old now). I started to experience disassociation, brain fog, and fatigue first, shortly followed by visual snow. I developed tinnitus in both ears around this time also. Since then, none of these symptoms have alleviated; my visual snow and tinnitus have become a constant for me, though they are thankfully relatively easy to ignore.

I've experienced headaches commonly throughout my life, but for years now they have become much more frequent. I used to rarely (if ever) experience tension headaches, but now I have tension headaches much more frequently than vascular ones. 

I also experience (thankfully rare) ocular migraines where I lose portions of my vision for 30 minutes to an hour in both eyes. 

I've become extremely sensitive to light and stimuli (especially visual and auditory). I've always been sensitive to loud noises and bright colours, but now I can hardly walk through a colourful, fluorescent-lit store without walking out feeling fatigued and in a fog.

The enamel on my front teeth has been shot since I was a child, and I've always been prone to canker sores. I have very stubborn dark circles under my eyes, and rough, bumpy skin on my upper arms. My joints feel too stiff and sore for my age, and I have very painful periods (that may skip a month occasionally). My memory is poor, and I struggle with OCD, tourettes, anxiety, and depression.

What lead me to look into celiac, however, was the development of gastrointestinal issues. I can't remember when these issues first started-- I think they've been slowly working into my system for years-- but they became much more pronounced over the last year or two. I feel bloated nearly all the time, and frequently have either diarrhea or constipation. I also have acid reflux, as well as frequent abdominal pain and discomfort. My diet is very heavy in foods that contain gluten, and I've noticed my gastrointestinal symptoms definitely worsen when I increase my intake of these foods. Just a couple of days ago, a pb&j sandwich and poptart were all that I ate in the evening; I went to sleep with abdominal discomfort, and woke up with much worse discomfort and diarrhea. Each flareup seems to be similarly marked by consuming gluten.

I've had a CT scan of my head, several in-depth eye exams, tests for diabetes, iron and vitamin deficiencies, and high blood pressure. I've had an x-ray of my neck and spine, an MRI of my jaw (for TMJD), an EEG-- all came back negative, except for one that determined I have hypothyroidism and the MRI that showed a deformity in the right side of my jaw, neither of which account for most of my symptoms. I also had one single test for celiac (I believe it was the tTG test), which also came back negative. 

The negative test result I had for celiac has not convinced me that gluten isn't to blame for my issues, however. I feel that too many of my symptoms line up with celiac disease to not at least treat it as a high possibility. I've also read about the possibility of the test I had showing false negatives, which gives me some hope that my negative test result for celiac wasn't just another dead end.

I'm not sure where to move from here, however. I truly feel that I have reasonable cause to suspect celiac, but I've also felt that way with many other tests that provided no answers. I wonder, though, if I should pursue more testing for celiac, or just try a gluten-free diet for a few months and see if it improves my symptoms. I am not interested in having an endoscopy; I feel that a positive blood test, or positive results from a gluten-free diet are all I want for answers (plus, sedatives and anesthesia give me wicked anxiety). 

I guess I'm making this forum for two reasons-- 1. I would like to know if people here that have been formally diagnosed with celiac feel that I have reason to suspect celiac based on my symptoms; 2. I would also like an opinion on trying the diet vs getting a diagnosis prior

I'd also love a full list of tests that I should look into if the primary one came back negative

 

Thank you to anyone that reads and/or replies to this, and sorry for how wordy this is ahhh

 

 

Edited by Susiron

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Hi Susiron,

Here is a link to the U of Chicago celiac center.  It has a lists of antibody screening tests for celiac disease.

*******************************************

http://www.cureceliacdisease.org/screening/

Antibody testing: only a first step

To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are:

  • Anti-tissue transglutaminase (tTG)
  • Anti-endomysium (EMA)
  • Anti-deamidated gliadin peptides (DGP)

A positive antibody test suggests that a person might have celiac disease, but it is not a conclusive test; a biopsy will be needed to confirm the diagnosis.

Your doctor may order one or more of the antibody tests indicated above (a “panel”) to aid in diagnosis.

*******************************************

Your symptoms could very well be caused by celiac disease IMHO.  You probably had the ttg IgA test.  There are several other antibody tests they can do, which might show up a positive even if the ttg IgA is negative.

If you want more testing for celiac disease, I'd ask the the celiac panel to be done.  But don't go off eating gluten before the tests , or your test results may not be accurate.

There are members on the forum who had only one positive antibody test out off the all the available tests.  But it only takes one kind of antibody attacking your gut to do damage.

Welcome to the forum!  I hope you find relief of your symptoms soon.

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Hi Susiron,

My daughter is also 23 and was diagnosed almost 3 years ago. She was very healthy and loved her pasta until her second semester in college. She gained the freshman 15 and enjoyed the dorm life. One day she got food poisoning and it went from bad to worse. Constant diarrhea, brain fog, periods that left her bedridden. She had test after test after test and everything came back negative. But she was getting weaker and her anxiety was overwhelming her everyday life. She had a colonoscopy at 18 and an endoscopy at 19. She was on anxiety medicine, diarrhea medicine, cramping medicine, acid medicine and allergy medicine. We had to label the top of her pill bottles so she would easily know which one to take. She had a coworker who was going to nursing school and suggested she get tested for Celiac. Her results were very high and it came back positive for celiac disease. She went gluten free but had several blood and prick tests done as she was still getting sick. We found out that she was allergic to wheat, yeast, shrimp & sesame seeds. Since sesame seeds are in a lot of gluten-free foods she now has to be more diligent in her food choices. She was 119 pounds at her weakest and now is healthy at 125. She has more good days than bad but without a firm diagnosis you will never have peace. Keep eating gluten and ask around for a gastroenterologist that is familiar with celiac disease.  Do your homework as it took us 4 doctors before we found one. 

Good luck and welcome to the forum. 

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Here's the current full celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

 

The TOTAL IgA MUST be done to see if you are IgA deficient. If one is IgA deficient then the IgA tests are not reliable for that person.

I would urge you if you test positive, to do an endoscopy. Reason being is that you are young and will likely want to have children in future. Celiac is genetic so if you are celiac & have kids, they will need to be tested every 2 years. If you are dx'd celiac "officially" it will be MUCH easier to get your kids tested. It's highly unlikely that you will get an "official" dx without a positive endoscopic biopsy. 

The endoscopy is easy. Fast after midnight, procedure doesn't take long, OP procedure.

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Thank you guys for your responses! I think that I will see about talking to my doctor to do the full round of tests. I should probably look up my records to see what test I did have to be sure, though I'm almost positive it was just the one at the time. I hate to say it but I'm really sort of... hopeful that I may have celiac. I can't say I look forward to a potential gluten-free lifestyle in the future, but if there's a chance that doing so will alleviate my brain fog, headaches, and intestinal discomfort, then it offers me a good outlook. 

I still really do not want to do an endoscopy, however. I understand why an endoscopy is performed, but I'm still of the mindset that if the blood tests give me reasonable cause to suspect celiac, and then the diet improves my symptoms, that will be answer enough for me. I have absolutely zero interest in having kids, so my diagnosis has no weight for any future generations. I'm deathly afraid of anesthesia and sedatives, and can't stomach the idea of braving either just for confirmation. I'm sorry if that sounds foolish and stubborn, but that is where my feelings lie with this presently.

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If you're sure you don't want to have kids then that's fine. I am childless by choice but didn't know I had celiac until I was 54 so it was a moot point for me by that time.

So the only thing I will say now is that if you do test positive on the blood, ask your doc to dx you with celiac. If the doc refuses based on blood alone, then you can ask to have the genetic test and if that's positive then also the resolution of symptoms on gluten-free diet. There IS now, a 4 out of 5 rule for dx.

https://www.ncbi.nlm.nih.gov/pubmed/20670718

Then you would have the 4 needed for a dx.

And at a minimum, you can ask the doc to give you a dx of non celiac gluten intolerance.

Again, you ask, why do i need an official dx if I'm not having kids? Answer...... an official dx will protect you in life. Examples: You end up in the hospital so you need gluten-free food, same with (heaven forbid!) a nursing home, follow up testing for vitamin or mineral deficiencies, for work in the case that they will have to make provisions or consider your food limitations under the Americans With Disabilities Act & you won't be forced to eat gluten in order to keep your job (dining with clients, travel for work, etc....).

These considerations may become less imperative over time as more & more of the population are developing food sensitivities of one sort or another but counting your chickens before they hatch is well, counting your chickens before they hatch. I think we're going to trend to not making people show proof that they can't eat this or that but that also may be a long way off time wise so if you can cover your bases before hand then you won't have to worry it at all.

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