Returning Symptoms – Was Never Officially Dx'd

[Ninja]

Hi everyone,

 

I'm looking for some advice. Brief history for those who do not know it: I went to see a N.D./M.D. in October 2011 after realizing that my constant illness, fatigue and intestinal issues were not normal. At that time I was on an anti-inflammatory and nasal steroid. The doc ordered a full Celiac panel which came back negative. I went gluten free in February of 2012 and the results were incredible. Saw a GI doctor in March 2012 who wanted me to go back on gluten for an endoscopy and colonoscopy. I refused.

 

I went for a check-up this past February with the same GI doctor and he was so amazed with my progress that he was ready to call it Celiac right there and then. We ordered the genetic test to confirm, but it was negative. I have not seen him since receiving those results so I have no idea what is actually written on my chart.

 

For the past month or two I have been declining. I've gone back to getting (to a lesser extent) frequent "D", GI pain, mild reflux, bloating and gas, joint pain, brain fog and fatigue. I am exhausted. At first I blamed it on stress, and it very well could be as I have been juggling a lot lately... but I guess it goes back to me doubting whether my problems were magically solved – as they appeared to be – with the gluten-free diet. 

 

I could just go back to the doctor, that would be the logical step, but I am afraid of being brushed off as just another IBS patient (I don't think anyone should be!). So, crazy as it sounds, here I am contemplating whether or not to head to Mayo in MN (about 4 hours away) even though I haven't exhausted the tests that my current doctor is probably still wiling to run (SIBO, endo/colonoscopy)!

 

My vitamin D was also tested last Feb. and turned out to be very low. I tapered off the supplementation for that and I'm wondering if I shouldn't have... It could very well be a nutrient issue... but I wouldn't know because the doctors aren't willing to run the necessary tests! I could say it was CC based on the rash, but I've been battling with iodine lately so.... I don't know. I'm pretty sure all of the symptoms are caused by an increase in inflammation I'm just not sure why there is an increase in inflammation.

 

So yea, I've boxed myself into a corner and I'm not sure what to do next. The brain fog is not helping.  I know this is probably kinda vague and difficult to answer, but does anyone have any thoughts or ideas? 

 

Thanks,

Ninja

[Mr. GF in Indiana]

If you think that your symptoms vary with your diet, and not from drugs or over the counter supplements: then try the Fodmap approach, found on the internet. In other words, eat the same thing every day until you get to a diet that does not give you symptoms, then continue it. Do not cheat. Then add back one thing after another until you get the symptoms; then repeat as necessary. This is tedious work and takes months. Ideally, if you think you are sensitive to wheat, then do not eat corn (ANY corn) or oatmeal, barley etc until you test wheat by first having the stable diet with no symptoms, then add wheat by having someone put a wheat product on your other food and NOT telling you it is there and having only a small amount you can't taste. In other words, you have to make it a scientific study where some days you get the wheat, and then you don't, until you find out if it's the wheat or just your brain playing tricks. With lactose sensitivity, one simply drinks a lot of milk and you know really fast...really really fast...that you have it, as you spend the day in the bathroom. Not so with wheat, the effect could take 24 hours. But be scientific, don't jump to conclusions and the hardest...don't cheat yourself. Meanwhile, keep a notebook of what you eat, how you feel, and all the symptoms as best you can describe them. If you can repeatedly prove that food A causes symptom B after x hours, then keep searching for other foods until you get a clear picture. Also, learn about the other food-centered reactions, such as eggs, milk, nightshades, peanuts, shellfish, corn, lectins, salicylates, etc. Nothing says that your issues are food, by the way, so keep an open mind. Scientific articles (each with their own inherent limitations) can be found on PubMed.com.

[notme]

(i like your little disclaimer in your sig line, gary  )  if it's on the internet, it must be true lolz!

 

my vitamin D was low - from what i understand it takes awhile to get up to 'normal' numbers - and i also supplement with b-12 (sublingual) - i do feel so much (very noticably!) better from taking the extra D.  are you taking a probiotic?   you could also have a secondary sensitivity (SOY does me in, it tries to trick me into thinking i've been glutened if i eat too much at once.  i can do a little, but i only figured that out with a food journal and elimination diet <which is boring but it works when you're trying to figure out what's making you sick.  good luck!

[Ninja]

Thanks. I've since decided to return to my PCP and GI doctor. 

 

Mr. gluten-free in Indiana: Prior to determining that gluten was, in fact, an issue I spent countless hours reading and researching medical journals from pubmed and similar places. I have done blind gluten challenges on a few occasions simply to rule out the possibility of "my brain playing tricks on me." The medical profession left me ill for too long, and I have learned that I need to be my own "pilot."

[1desperateladysaved]

Are you sure you are not getting cross contamination or some unread label trouble.  I went for quite a while using a flavoring that contained gluten when I thought it was a 1 ingredient thing, but it wasn't.

 

I like Between the Bridges Healing Center Mankato.  The doctor had been involved with Mayo Clinic, if I have it right.  He has an Osteopathic degree and is trained in Functional Medicine.  I see the nurse practitioner there. 

[dilettantesteph]

Without a proper diagnosis, it is possible that it is something else.  Even with a proper diagnosis it is possible that it is something else.  It is a good idea to go back to your doctor and get some professional help.  Meanwhile, I found out that I got sensitive to lower levels of gluten over time.  Symptoms would come back and I would eliminate more sources of contamination and feel better again.  Could that be what is happening to you?  Or, is it possible that you have changed your diet.  Have you gotten busier so that you are eating more convenience foods, for example?  A change to a diet a bit higher in cc could be the source of your problems.  I hope that you can get to the bottom of it and feel better soon.

[Ninja]

Thank you both! I am still going to make an appointment with my doctors, but I did find out that a family member has been using a basting brush (I think this is the correct term? - the bristles look like hair) that was used during pre-gluten-free days for sauces that did have wheat in them. He has been using the brush to make these sandwiches, which we only make in the summer because of the surplus of garden tomatoes! So that could be a source. I have been less careful lately, which is why I've allowed him to make them while I'm not around.