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Member Since 13 Mar 2009
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#884360 Grown Daughter Tests Negative For Celiac Antibodies, But

Posted by on 14 August 2013 - 03:21 PM

Would she be willing to go gluten-free as a NCGI patient? It would be a shame for her health to decline... I remember when mine took a nose dive in my early twenties, and it never recovered completely.  


Ditto for me...and since my antibodies were all barely positive at dx it is likely I had negative antibodies for years -- my kids all had negative blood work except one with  positive DGP-IgG -- although all have had every health issue improve or disappear gluten-free.  Two have now been diagnosed based on improved blood nutrient levels along with symptom resolution.  Grands were diagnosed based on symptom resolution. 


I also have two copies of DQ2 -- if you have two copies of both DQ2 and DQ8 each of your children have at least one copy of each of these genes.

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#884047 Help With Results

Posted by on 12 August 2013 - 05:51 PM

It certainly makes it tough when you have known wheat bothers you...going gluten light is enough to make the tests inaccurrate yet it seems it has not been enough to completely restore your health over the years.

Another challenge certainly doesn't sound like a good option. Seems your best option now would be to remove all gluten....this means no gluten...take a look at the Newbie 101 thread to make sure you are identifying all sources of gluten. Repeat your nutritional and basic blood work and perhaps repeat endo at one year gluten-free to see if the issues that were seen during this procedure improve gluten-free. Also check if your GI ran a celiac antibody panel at the time of your recent challenge/endo so you have these numbers for comparison.

I would certainly have your child tested now if he is ingesting gluten. It is advised that all first degree relatives be tested every three years or more frequently if symptoms arise.
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#883862 T-Transglutaminase Iga Ab

Posted by on 11 August 2013 - 05:43 PM

Hi There!


It can take time for all your antibody tests to get back in normal range if your initial numbers were high.  The numbers don't mean much without comparison.


If your initial tTG was over 100 then 45 is the right direction -- make sure the Gliadin numbers have also fallen from your initial blood tests.


My antibody tests were all relatively low positive at dx so did get back within normal range during the first six months and were near 0 at a year.  However, my annual biopsies did reflect worse damage after the first year and only improved minimally at year three -- I had them annually as my symptoms were not improving over those first years...the autoimmune symptoms all became far worse.  


So much is just not known about why it takes some longer than others to heal.  If your symptoms have improved - I would double check your meds, personal care products and then try to be patient until your next blood check -- my guess is the numbers will continue to move in the right direction....sometimes it just takes time.


Hang in there :)

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#882844 New Girl Here With Questions! :d

Posted by on 04 August 2013 - 09:10 AM


New doctor...new opportunity.

Doctors often start with a question such as this:

What am I seeing you for today...these and similar questions often lead us away from talking about the whole health picture.

Bring two pieces of paper into the exam with you.

First a list of symptom history. Review this with the doctor....be sure to point out while you do have some anxiety - you do not have an eating disorder - explain about the bloating and bowel issues as you have here. I find having a simple bullet point list helps me give the doctor a more accurate picture than he/she gets when I let them lead the conversation.

Second is list if all the testing you are looking for to rule out Celiac Disease. Nicole has provided a very complete list...I would use it...here is the list of nutrient/misc tests my celiac doctor ran at diagnosis along with all my follow ups.

B1 B2 B6 B12 D K Iron Ferritin Copper Zinc
CMP - Complete Metabolic Panel covers many of the other nutrients not listed above
CBC - Complete Blood Count checks the items Nicole mentioned plus liver enzemes, etc.

An optional third item would be a complete list of symptoms associated with Celiac Disease....I will add the link later...cant do from my mobile device.

Most important - preparation for this appt will help to reduce the anxiety that can happen at any doctor appt. Prepare and breath. Before you go into the appt concentrate on taking a few deep breaths and then again once you are in the exam room.

The doctor should be there to help...unfortunately some of them forget this and are dismissive. Hopefully this will be one of the ones that listens to his/her patients.

Hang in there :)
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#882796 Some Test Results , Don't Look Bad

Posted by on 03 August 2013 - 07:07 PM

Yep all fine.  Perhaps call your doctor's office to see if they ran the rest of the Celiac Antibody Panel:


tTG - both IgA and IgG

DGP - both IgA and IgG

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#882632 Tmi Topic: Poo Troubles

Posted by on 02 August 2013 - 07:05 PM

I am not suggesting that you should not go to the doctor if there is real concern, but it sounds like this may be a one off after a week of not being regular and trying several remedies for constipation.


I have no idea what caused this sweet smell -- but unless it happens repeatedly -- I would watch, wait and take note of bowel changes as you become completely gluten-free for more than just a week.


Enjoy your trip -- hope you feel wonderful during your travels : )

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#882347 Understanding My Labs

Posted by on 01 August 2013 - 11:42 AM



My guess is you indeed have Celiac Disease.  Here is the key:  You somehow managed to have a positive tTG-IgA while having insufficient Total Serum IgA. -- Immunoglobulin A (IgA) -               64 mg/DL -  range 70-410


They only ran AGA-IgA -- I would strongly suggest getting the following tests missing from your panel:


DGP - both IgA and IgG -- normally with insuffiecient Total IgA - I would not suggest the IgA version of this test, but since you hit possitive on the tTG I would keep it in.


EMA -- some labs automatically run and EMA when the tTG is possitive - but do ask your doctor to be sure the IgG version of this was run for you.


Given your symptom history and that of your child -- I would strongly suggest you go forward with an endscopy and associated small intestine biopsies -- it is important to try to have a GI with celiac biopsy experience do this if at all possible.


IMPORTANT -- do not remove gluten until all your testing is complete.   Then remove ALL gluten -- it may take some time, but I believe you will see improvement in all your symptoms.


Glad to hear your son is beginning to live gluten-free -- do not "try" this -- remove ALL gluten for at least three months -- I do think you will see improvement in him more quickly than yourself as he is younger and your symptoms are more autoimmune in nature.


Hang in there :)


Hope that wasn't too confusing...let us know if you have more questions.

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#882043 How About A Reward For Avoiding Getting Glutened!

Posted by on 30 July 2013 - 04:18 PM

Here you go....


Wrong year....yet heartfelt!



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#881964 I'm So Confused ...

Posted by on 30 July 2013 - 12:00 PM

My tests were completed by Sonora Quest Labs.  Here's what they said about the test I took.  



This panel includes a test for tTG IgA antibodies (enzyme-linked immunosorbent assay [ELISA]) and total IgA concentration (immunoturbidometry). When the tTG IgA test is positive, an EMA IgA antibody test is performed (immunofluorescence assay); if positive, the EMA titer will be determined and reported. If the IgA concentration is low, a tTG IgG antibody test will be performed (ELISA). There is an additional charge, associated with an additional CPT code, for the latter 3 tests (EMA IgA, EMA titer, and tTG IgG)


Basically, I tested positive for the iTG antibody IgA  so they did the other tests -  which I was negative.   None of my docs want me to go through a biopsy.  They both said it wasn't needed (even both disagree on the Celiac diagnosis).


I have no other symptoms other than fatigue and pain from my lymphatic malfmormation tumors in my neck.   I can't remember the last time I had a stomach ache - 2 or 3 years ago was the last time I remember.  


Thank you so much for your help.   :D


Perhaps I am missing something, but I still don't see where you were tested for either Deamidated Gliadin Peptide (DGP) or Anti-Gliadin Antibody (AGA).  These should be run if they have not been.


Celiac Disease has over 300 associated symptoms...not everyone has digestive issues.




With the Thyroid, Anemia and strong positive tTG I'd still bet on Celiac Disease.  If you choose not to have an endo or any more tests -- it is time to remove ALL gluten.


Good luck to you :)

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#881615 Three Days In And First Accidental Glutening

Posted by on 28 July 2013 - 02:43 PM

I vote for the colander...it was one of the first things to get me.


In my opinion it is way to early to be considering other intolerance.  You had some improvement during your first three days which is fantastic....focus on that if you can....accidents will happen in the early days and heck they can happen anytime, but will become rare as you master living gluten-free.  Just keep focused on getting all the gluten out of your life and try not to be to hard on yourself.  We have all been there, done that.


Hoping you feel much better again very soon :)

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#881155 Need Advice, Please!

Posted by on 25 July 2013 - 04:23 PM

Welcome Niks!


You already responded to me first thought -- accidental gluten getting in.  How about her medications...have you checked with their manufacturers to assure they are gluten free....pharmacies often switch generics -- this happened to my daughter again just last year and we had been gluten-free for a very long time.


I second using a food/symptom log along with an elimination diet.  It certainly sounds like she is ingesting something that she is intolerant of.


Good Luck to you :)

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#880315 Struggling As A Celiac:(

Posted by on 20 July 2013 - 06:45 AM

Welcome Lexi!


Sorry to hear you are having such a tough time at home -- Karen is right....there are quite a few parents on this forum who will try to help....me included.


I agree with making a real effort to help or take over the shopping while on your break.


Offer to cook just one family dinner per week, maybe two.  If that goes well more until you return to school.  Starting with one should be easy enough for you and a nice break for your Mom. 


Sometimes us parents tend to view our young adult kids as children -- I am guilty of this.


That being said, your whole family needs to be tested.  If you have suggested this before....try again...prepare a dinner conversation as you would prepare a presentation at school.  Use handouts...be sure to re-visit the past two years of your realization that you have Celiac Disease -- am a bit confused about your diagnosis process -- but whether it is Celiac Disease or NCGS you need to be gluten free and there is a real possibility your brother or parents may need to be as well.


It may not seem fair...but living the way you are is not fun and certainly not good for your health.


Make a plan....present the facts to your family in a clear concise manner...things may get better.


If not...make sure you are along for the shopping missions or minimally add to your Dad's shopping list:  chicken, pork, ground beef or turkey, rice, potato, gluten-free pasta, specific fruits and veggies you need purchased and then proceed to eat right for you.  Most processed foods labeled gluten-free are much more expensive and not great for a healthful diet -- so fill that frig with whole food -- adding a few labeled gluten-free items as treats.  There are many mainstream "treats" that are naturally gluten-free - I'm guessing you know many of them from eating away at school.


Oh for that first dinner...simply baked chicken with salt and pepper, rice and a vegetable is easy to make even if you have never cooked before...pop back in if you need step by step instructions.


Hang in there :)

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#879228 The New Celiac Drug Is Out There

Posted by on 12 July 2013 - 11:55 AM

I do not  share the distain the majority in this thread have with big bad pharmaceutical  companies.  Can I assume  you folks disenchanted with the business end of modern pharmacology did  not allow any of your children to be  immunized against the devastating childhood illness and disease( Not possible unless you plan on home schooling in the US ). Additionally, are you confiscating insulin from the diabetic's you know. Explaining to them as their eyesight fades and their extremities are being amputated. You cannot tolerate these profit hungry , corrupt capitalist pigs profiting from their misfortune. As far as side effect go, consuming too much water has harmful side effects. Working for a living can have harmful side effects, most notable increased stress levels.


The cost associated with research and development to bring a new and effective medication to market is astronomical. Even more prohibitive considering the very small market , a Celiac diagnosis statistically is  a rare occurrence, and can be controlled effectively by diet. The fact that any pharmaceutical company is investing in Celiac research is a blessing. Historically, research and development in one drug has yielded benefits in other related illness and disease. I do not find any satisfaction in eating produce and unprocessed meat for the remainder of my life nor the spontaneity you have to give up.


You have incorrectly interpreted many of those that have commented on this thread. 


I have the utmost respect for the research involved in finding new pharmaceuticals and vaccines.  I have worked with some of the top scientists in this field and would not have figured out how to help my family without input from these Biologists and Chemists. 


That being said, I do not believe that just because we have a drug that may improve a symptom it should be the first choice for all patients. 


Furthermore, I do not believe patients should be advertised to at the rate they currently are.  Doctors should prescribe medication -- we should not hear of something that "may" help the symptoms we or loved ones are experiencing constantly between news and entertainment on television or within the pages each and every magazine we choose to read. 


Our current medical system is not trained to look for answers to their patient's medical conditions in the food those patients are consuming.  Not all conditions need medication. 


My family has eight autoimmune conditions among us -- not one has improved with the current push of steroids, immunosuppressants, SNRIs, SSRIs and hefty pain medications.  All of us have had our health improved by dietary choices.


We also have had many structural medical issues and cancer and you bet we are grateful beyond measure for the doctors, nurses and medical researchers that save lives every day.


As for a new celiac drug -- I have stated before and I'll say again -- it would be fantastic to have something that would allow my family to eat safely outside of our own kitchen and welcome that day -- but doubt any of us will return to eating our pre-celiac diagnosis diet.

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#878730 The New Celiac Drug Is Out There

Posted by on 09 July 2013 - 05:55 AM

Couldn't agree more with you man. It seems that there are heavily biased opinions often spread on this forum that may or may not hold any basis in actual fact.


Opinions are frequently talked about in this forum -- we try very hard to make folks aware they should declare when something is their opinion or experience.  If it is scientific in nature -- links to the research is expected.


Opinions and experience of others is very valuable -- it should simply be identified as such to avoid confusion.


Here is a great example....Had you worded the above such as this:


"In my opinion there are heavily biased opinions on this forum......"


I would not be responding to your post -- I would have taken it simply as your opinion and moved along -- please add qualifying words in the future or provide links that support your theories.


Thank you.

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#878692 Anyone Get B12 Shots?

Posted by on 08 July 2013 - 05:43 PM

I was watching info about how serum b12 is usually not enough for diagnosing b12 deficiency. It was something i was going to look into but I was curious...has anyone had b12 shots? What was it like? What are they injecting into you exactly? I know vaccines use egg white? Kinda curious about this. Only if i have a severe deficiency mind you. Otherwise I'll be looking for sublingual b12. My grandfather was getting b12 shots after diagnosed with alzheimers but I've never asked him anything about it.


Start with a serum B12....not sure what you were watching...but start with a blood test.  If the results are low....then time to supplement.  Shots are important for some...but not a starting point for most.


While you are having blood drawn...if you still suspect Celiac Disease -- you may wish to add:


B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc -- if you haven't had them run recently.

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