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Atypical Symptoms (?), 1 Monthly Attack
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I was Dxed with hypothyroidism in 2008 and lost my once fabulous memory as of late '07 (26 at the time). Since then, I'd always assumed my memory was related to my thyroid, questioned doctors about supplemental T3, had neuropsych testing only this past spring which I'm pretty sure confirmed that I had definite short term memory losses (it was certainly obvious to me), and a clean MRI. Hashimotos encephalopthy was being considered, but never pursued (no other neuro symptoms).

I've had a good gut all my life.

I had a severe gut pain attack in October 2011 that I chalked up to food poisoning. Throwing up, diarrhea.

I had another attack January 2012, another in March, May, June, July (the latter two were a month and a day apart). In June, I had gone to another endocrinologist for a second opinion about the memory thing - He recommended being tested for CELIAC'S, sleep apnea, B12 (its always been fine), maybe some other basics. He suggested celiacs without even hearing about my gut.

I also had a terrible rash on my foot which no salve could cure.

After the July attack, I knew it couldnt possibly be constant food poisoning and went to my GP who suggested trying the gluten-free diet. My antibody tests and others were negative including abdominal ultrasound.

I did the diet July 19-Aug 10 and avoided my august attack. My foot rash pretty much disappeared, so I had to cancel my august dermatology appt.

Started back on gluten. Got the attack again mid-september (1 month and a week after re-starting gluten). The pain was so bad, I called the gastro doctor's office in tears, begging for an earlier appointment. The pain is so nauseating I'll make myself throw up because the constriction offers some relief. I'm on the toilet every 10-15 minutes. Episodes usually last a whole day 7am-5pm, but I have had some shorter.. 7am-2pm. I re-started gluten-free after september. Early october, I had a club sandwich and had a much more minor attack on Oct 16th - which I truly wanted to believe was food poisoning because I had eaten 1.5 week old cheesecake (gluten-free, no less - ha!) - the pain was "different", I was able to sit comfortably for a few minutes, I also didnt have the mental and systemic fatigue that I usually do, and it lasted only a few hours.

My theory is that possibly I have the ill-understood "gluten intolerance", where it builds up to unacceptable levels throughout the month until it reaches threshold and explodes.

IS THIS PLAUSIBLE? ANY OTHER THEORIES?

I see the gastro on Dec 10 and have been gobbling gluten since end of November in preparation.

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    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
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    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
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