GottaSki

Had a thought early this morning -- when we remove foods we often replace them with others that can also be problematic -- where are you getting protein now?  If it is a lot of legumes and nuts -- those can be very difficult for some of us to digest.

 

I know you said you are vegetarian - but you also said you would like to do anything to feel better...perhaps consider some good quality poultry.  And replace the canned tuna with fresh salmon, tuna and other fresh fish.

Had any doctor thought to test me for celiac disease at any time in my first 43 years I would have likely tested negative - when finally diagnosed all of my antibodies were positive - yet weakly in most cases.  All of my children and grands tested sero-neg with the exception of oldest that only had one positive DGP.  

I don't care what we call it - gluten was destroying our bodies - so four of us now have "official" diagnosis and two remain labeled NGCI - will any of us touch gluten ever again - we would rather eat ground glass and have suggested to one GI that perhaps he should eat just a little bit of glass each day until we can measure the damage it "may" cause in his digestive system.

Just curious if anyone has experienced better effort from an allergist/immunologist than the gastro?

 

We have been working with the gastro since Sept to identify what my 2yr olds problems are, or the source of her chronic 'functional diarrhea.'

 

Her IgA was negative, so the gastro is standing firm on not celiac.

 

I pushed for a RAST allergy testing and now that we identified a soy and peanut allergy, we've moved to an allergist.  She's still under the care of the gastro due to her reflux and bowel issues, but she has become dismissive now that a confirmed food allergy has been found.  We are set to schedule the endoscope after June if the problems continue.

 

We've eliminated soy, but its only been a couple weeks so its too early for any dramatic improvement.  I believe there is something else as the cause of her chronic issues, so we will likely continue more allergy testing, and I plan to push for the IgG test since the gastro refused.

 

Basically, did anyone actually get diagnosed from an immunologist rather than a gastro?

 

Just have a minute -- but if gastro refused BASIC celiac antibody testing -- yes, you should request from Allergy - although celiac antibody testing is not within their normal tests.

 

Any chance your primary can order proper celiac antibody testing?

Warning -- this recipe forgot the first most important step -- line up your sous chef(s) prior to starting this adventure -- we ended up with something very close - but my kids may have been ready to duck and cover when I discovered my wire mesh strainer missing at a crucial moment.

 

http://www.chow.com/...charlotte-russe

 

Will give it another shot someday - just not someday soon

My thought is now that all your testing is complete -- remove all sources of gluten for at least three months - six is better.

 

The tests are not perfect - as for those "patchy" spots -- make sure you get the written copy of the pathology report -- in addition to a written copy of the doctor's procedure report.

 

Good Luck -- let us know how it goes or if you have more questions

Recipes for tasty "Lo-Cal" BBQ sauce to coat that arm - check

This guy made me smile...threw the pieces left over from the clover into a pan with the left over frosting...

 

Have a great week everyone!

 

Good Morning Robb-

 

You are right - we are not doctors - but personally I have way too much experience with Lupus and other AIs that often run together with Celiac Disease.

 

My daughter was diagnosed with Lupus at 13...she'll be turning 30 next month and is living a very full life...has it been easy? No.  

 

Here is the interesting thing -- none of my kids tested positive on the celiac antibody tests -- with the exception of my daughter's DGP - IgG at 25 years of age.  ALL of them and my grandkids have had some or complete improvement in all our miscellaneous autoimmune symptoms since we removed gluten four years ago.  Regardless of your celiac antibody tests...with your symptoms remove gluten for at least three months - six is better while you keep working with your doctors to diagnose possible other AIs.

 

All that said -- I would be remiss if I did not address the statement about killing yourself.  Many of us understand how frustrating and hopeless getting a diagnosis can far to often be -- but you can get better.  If you are seriously feeling like you can not go on - call 

 

http://www.suicidepr...onlifeline.org/

 

Take care and let us know if we can help walk you through your upcoming doctor appointments - preparing for these appts can really help empower you.

Here I am!!!!  Was headed to a wheelchair (probably should have used one last year- I was just too stubborn to accept it from the doctor). 

 

The three years that followed my celiac diagnosis were worse than those before diagnosis -- was I frustrated - hell yes -- beyond belief, but I kept trying -- now I am skiing again -- I walk everyday -- sometimes twice and I am able to run a half mile or so.  Still struggling to get back on my bike because my wrists and shoulders are proving more stubborn than my hips, knees, ankles and toes in getting moving.-- but I will be riding again very soon.

 

Do I have rough days - sure.

 

Am I in pain every morning when I rise - yep

 

Does it suck that my diet is so strict -- not any more.  While I was still very sick I was having regular pity parties with me, myself and I -- now that I am up and running - LIVING a very full life for the first time in over a decade -- I can honestly say I would eat anything to stay this way....lucky for me I have loads of delicious foods

Welcome!

 

Your daughter's IgA is indeed in normal range -- which means all of the celiac antibody tests are accurate.

 

I agree that with "silent" symptoms I would opt for the endoscopy as this information may be valuable both to see if the damage is significant or in the future for follow up.

 

Please don't think that you could have prevented this by not feeding her gluten to begin with....how could you have known?  and yes, you will likely see a reduction or complete disappearance of mouth sores.  My kids went gluten-free at 13, 15 and 25 and all three have no more mouth sores....the middle one had them nearly every month growing up and the docs just shook their heads and gave us a cream that did help speed the healing.

 

Once you are done with the diagnosis process you can remove all sources of gluten from her diet.  You may be surprised to find that she did have other symptoms that she just thought were "normal" -- society rarely talks "poop" with our kids after the diapers are in the past -- and our doctors rarely ask for details of our experience in the bathroom.  I was 43 being diagnosed with celiac before I had my first frank discussion with my doc about poop -- was more than a little embarrassed when he started talking about it -- but somehow he knew exactly what type of constipation I had dealt with since I was a kid.  Sorry...guess that might of been TMI...just wanted to point out that my children and I had many celiac symptoms that we either dismissed or were dismissed by excellent doctors.

 

Take this time while you are waiting for the appt with GI to start reading and preparing for removing gluten from your world.  I will not lie -- it is a tough transition for the first few months, but it does get much easier.

 

One last thought -- Celiac Disease is genetic -- You, her Dad and any siblings need to be tested with a complete celiac panel every 3 years and more often should symptoms arise.

 

Good Luck to you and your family

Hi Diana-

 

I would not promote wearing a mask unless your immune system is so weak that you can not leave the house without catching a cold or flu bug.

 

Moderate precaution is wise for any of us -- I am extra cautious when out in the world....with food and I have a bandana around my neck for when I ride my bike that I use to cover my mouth & nose when needed due to severe reactions from car exhaust.....but attending a gathering of family and friends is safe for me.  I bring my own food, wash my hands frequently at the event and again when I return home. 

 

Donning a surgical mask - in my opinion would do more harm than good - again, just my opinion.

Rambling is good....sharing our experience here is good.

 

The reason many of us stick around on this forum is directly related to the theme of this thread...had ONE doctor known the actual symptoms of celiac disease of the many I went to over the past thirty years with IDENTICAL symptoms, perhaps my career and last ten years would not have been destroyed.  I am very lucky -- I have a husband that stuck by me even when he began to think it was all in my head -- when finally diagnosed he had a very tough time with his feelings of guilt over dismissing much of what I said with regard to how I was feeling over 30 years.  I forgave him -- no problem -- he stuck with me.

 

So---I answer as many questions as I can from folks that come here --- doctors are starting to catch up with us -- but they have a very long way to go.  The primary that finally diagnosed me after three years and over 50 medical tests - first dismissed Celiac Disease because I was neither child or underweight -- and she is a young physician that showed me her exact notes from med school with regard to celiac disease -- one small lecture with key points -- childhood disease that many outgrow; short stature, underweight, severe diarrhea.  None of those were my symptoms even as a child!!!

Ah Peg - think you may be confusing me with Irish - which is a huge compliment.

And for others reading along - removing gluten alone did not bring health to me -- yet it did for two of my kids and two grands....my family could be the poster for early diagnosis.

Ps..someone asked.why we wouldn't tell newbies it takes years to heal?  MOST celiacs do heal with the complete removal of gluten for a period of 3 to 12 months.  Why would we, that have had the worst possible outcome of this disease want to put scary thoughts into those newly diagnosed?

I disagree with calling the home tests garbage.  It is limiting in that it only measures tTG-IgA, but until very recently this was the only test folks were given to screen for Celiac Disease and still remains the only test many primary doctors order.

With the positive tTG along with the long list of symptoms and a child diagnosed - I would say you are very likely celiac.  It is wise to stay on gluten until you have the full antibody panel run - I forget if toworryornot listed nutrient testing as well - so ill add the following to your list - you can have primary run all of these to help speed the diagnostic process:

B1, B2, B6, B12, D, K, iron, Ferritin, Copper and Zinc
CBC
CMP

Good Luck to you both!

I remember when I first joined this group after my Celiac diagnosis, I read a post from a lady who said she couldn't tolerate any grains except for occasional white rice.  I thought to myself, bless her soul!  Well here comes another one.

 

I don't know if I'm having a bad week or what.  I had a bowl hot cereal--teff grain made with pineapples and pure brown sugar late one day.  (It tastes almost identical to pineapple upside down cake; teff hot cereal has a bready taste, and texture like rice cereal.)   Shortly after, none of my joints wanted to move and I felt whipped.  On the other hand, aspirin took it all away so I'm sure the cause was mainly inflammation.   On another day I had Udi's granola in yogurt and almost immediately the same joint pain started back up, and again aspirin took it away.  No stomach symptoms, just extreme unusual fatigue.  

 

Though I've never had a single symptom from brown or white rice, I went grain free, all natural/whole foods, for a couple of days and I've felt fabulous.   

 

In addition to Celiac, I'm completely intolerant to corn, as in I can't tolerate corn vinegar, oil, derivatives, caramel color, starch, etc. without having the same symptoms as Celiac, plus anaphylaxis from the very contact of corn on my throat.  It's immediate and scary.  My last episode was from almond/coconut milk that contained the forbidden potassium citrate.  I had had a tablespoon in my coffee.  I responded to one swallow of the coffee.

 

Could there be some reality to being grain intolerant altogether?  

 

I get the feeling the researchers should have categories for Celiacs, like diabetes type 1 and 2.  If that were the case, I think I'd be Celiac Type 10.  It seems like I keep having to adjust my diet and it takes a lot not to get depressed over it.

 

 

Hello from another 10 -- seems that those of us that went undiagnosed for decades have to do a little more work than the average celiac...I've been grain and many other things free for over eighteen months and so far I have only managed a touch of white rice -- and I mean just a bite -- tried a small serving awhile back and didn't work well.

 

Good news is now that I am finally feeling like a human-being rather than human-amoeba I can finally say I don't care what I don't get to eat as long as I get to stay vertical -- I do, however, throw many teeny-tiny pity parties that I don't invite anyone to -- once in awhile my husband -- but they are a very short foot stomping session which passes

 

I do remain ever hopeful that I will get many healthful foods back one day....especially potato chips