How should I go about testing? (long post--sorry)

lisamombo

Hi. I am new to this site. I have some questions. I will start with background info.

My son (8 years old) was diagnosed with food allergies to wheat, soy, corn, dairy and peanut 2 1/2 years ago. He was having horrible stomach aches and diarreah for about 1 year before the diagnosis. Taking out each of these foods helped him a great deal. He was still having stomach aches, but they were much more manageable. At the time of his food allergy testing they did a blood panel for celiac and it was:

Tissue Transglumainase Antibody, IGA (tTG) AB, IGA <20 (which was negative).

Antigliadin Antibody Panel:
Gliadin AB IGA <20 (which was negative)
Gliadin AB IGG His # was 34 which is moderate to strong positive
(<24 negative, 24-30 weak positive, >30 moderate to strong positive)

In the summer (2006) he was re-tested for his food allergies and wheat was no longer an allergy! How could that be? I knew he could not eat wheat, spelt or oats without horrible pain! I decided to research celiac disease. I knew bits about it because on a wheat free diet we were buying many gluten free foods and had friends (two families) who had just gone through diagnosis. I tried to get his allergist, his pediatrician and his grandfather (also a pediatrician) and his holistic pediatrician to get him tested through a genetic test and none of them would authorize it. Some said he just didn't have the classic signs, others did not know about the genetic tests. I knew he could not have the blood test or the scope because he had not had wheat in 2 years and not had gluten in 6 months. If they had only done a scope when he was blood tested!!

We finally convinced my husband's dad (the pediatrician) to accept the results of the genetic test from Kimball Genetics. According to my stubborn Father-in-Law, he had a negative celiac DNA test. According to Kimball Genetics he tests positive for a celiac disease-associated HLA allele. He had one of the two DQ2 alleles. The interpretation from Kimball Genetics is:

A DQA1*05 allele was detected but neither of the DQB1 alleles was detected. The DQ2 molecule is encoded by a DQB1*05 allele and a DQA1*02 allele. This individual is positive for half of the DQ2 heterodimer. This result, in conjuntion with clinical symtoms, IS consistent with a diagnosis of celiac disease.[
Among patients with celiac disease, over 90% have DQ2 and approximately 5% have half of the DQ2 heterodimer.

My husband and I consider our son to have celiac disease, but we have not shared this information with our own doctors. I know what the answer will be: just because he has the gene, does not mean he has celiac disease. I know that it is true, but he also has symptoms!

Should I take him to a gastro doctor? Should I just leave it alone? Does he really need a diagnosis? I guess either way he needs to be off of gluten, but if it is an allergy to gluten, do I test it occassionally to see if he reacts, or stay clear forever?

I'd like to put me into the mix too. I have had headaches (migraines 5-6 times a month with daily headaches most days per month without medications). I go to a headache and migraine clinic and they have me on many medications for migraines and headaches. The migraines started around the time of my first pregnancy 8 1/2 years ag, but I have had headaches since childhood. I have also had stomach issues (but minor compared to my son and others I have read about) since then. I would switch between constipation and diahrrea a few times a month.

I have tried to go off of gluten (pretty easy for me because I cook and bake for my son already) for the last 5 weeks and I have not had one headache!!! I am thinking about getting tested too, but what route should I go? Will my doctor test me based on headaches and minor stomach problems? Will my tests show up on bloodwork? It appears that not everyone's will. Do I go straight to a gastro that may know more? Is there such a thing? Should I do a test at enterolabs like others?

Any help would be great.

Thanks,
Lisa in Michigan
_________________
Lisa gluten free since 12/07
Mom to Noah, 9 years, Avoiding all gluten with a positive Celiac genetic test and stomach symptoms.
Mom to Hannah (5) Soon to be celiac tested.

Sm727 · Joined: 09 Dec 2006 Posts: 32

I'm still pretty new to all of this myself...but a few quick things to think about...

1. If your son is doing better without eating these foods, does he really need the diagnosis right now? He would need to start eating wheat and gluten for about 2 weeks before going through the tests...is that worth it?

2. Really the same question for you...you would need to start eating wheat and gluten again for 2 weeks...is it worth it to possibly get those headaches back?

I guess what you really need to think about here is...is the actual "label" worth feeling sick again for 2+ weeks? If the answer is yes, then I would see a gastro doc as he would probably be more knowledgeable than a primary. If the answer is no, then keep on going gluten free and see how you and your son feel over the next couple months. If you are both seeing significant improvements then I see no reason to mess it up...if you are still having some symptoms then maybe you should think about going through some tests.

Hope this helps!

aklap · Joined: 02 Oct 2004 Posts: 10974 Location: WI, USA

Hi Lisa,

I'm running short on time right now, but I just wanted to say Hi and welcome you to the board before I forget about it.

Very Happy

_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

John · Joined: 12 Oct 2006 Posts: 70

cruelshoes · Joined: 23 Sep 2005 Posts: 3561 Location: Washington State

TenKLady · Joined: 19 Jan 2005 Posts: 121 Location: Westminster, CO

Well said, Colleen!

Laura

Noatak · Joined: 13 Nov 2005 Posts: 497 Location: Massachusetts

I think everyone here has presented with some great points but I have to admit, I agree with John on this. I guess I am confused as to why anyone would have such issues with compliance to a lifestyle that makes such a dramatic difference in thier health?

I was diagnosed through bloodwork and gene testing...no biopsy. I was just too sick to wait for something that I knew what the outcome would be.
Like Colleen, I was severly malnourished and underweight and just wanted my life back. Even my doctor, after looking at my blood results, said she would not blame me if I passed on the scope. As far as she is concerned, I have CD.

The question of compliance in teens is something that will have to be addressed even if there is a pretty picture of blunted villi. Teens may cheat and nothing their parents can say will make any difference to them.
Like anyone else, the decision to stay GF has to come from the person directly. I know people going through this right now with their kids and they are hoping that their kids will finally come around and realize just how dangerous it is to cheat but they can't follow them around 24/7.

I must be incredibly lucky in that I have no issues with being GF. I do not find it hard whatsoever and would never cheat intentionally because I never want to be that sick again. The only problem is the expense of this lifestyle but many people blow their money on stuff they don't even need.
My money goes to my good health so it's money well spent. I just don't think I would put a child through a GF challenge for testing that may come back iffy. So many doctor's know nothing about CD and if told testing was negative or borderline, parents are going to doubt themselves and then they are back at square one.

Sounds like Lisa's son has all the symptoms of CD and, with his allergy testing results, one could conclude that his odds of having CD are higher than most. You can have both an allergy and an intolerance at the same time...in fact, I think many people will show an allergy before diagnosis because their systems are so messed up from eating wheat. I tested positive for a wheat allergy years ago (slight) but the doctor didn't tell me to stop eating it because it was so mild. Duh! That's when I listened to them and didn't question.....hard lesson learned.

John · Joined: 12 Oct 2006 Posts: 70

It definately depends on personal preference and individual circumstances Very Happy

I was unemployed and uninsured when I tried the diet, so testing up front wasn't an option (I needed to get better to make the money to see the doctor! Now I got the money and I don't really need the doctor!)

I couldn't go back to eating gluten for a blood test either, because my symptoms set on so severely and for at least three days. So compliance isn't an issue, for me at least.

I guess, if my symptoms weren't so bad and the difference in my health so night & day, there could be a lot of skepticism from friends and family and a bit of doubt in my mind. That could make things difficult, indeed.

cruelshoes · Joined: 23 Sep 2005 Posts: 3561 Location: Washington State

I know LOTS of people that have compliance issues with a GF diet. Not having a clear diagnosis makes it just that much harder. One woman I work with has been told by her MD to do a GF diet and I see her cheating every chance she gets. And then she wants to commiserate with me about how crappy she feels. Um...no.

You remember those commercials from the 70's that said "you never get a second chance to make a first impression"? I don't even know what they were advertising - dandruff shampoo or something? Very Happy

My whole point is that you can't (or won't want to) go back to square one to get a diagnosis once you have gone GF. Better to get it done right in the first place.

Without a diagnosis you cannot get a 529 plan, you can't participate in research studies, and there are lots of other reasons, too. I just think it's so important. I am beginning to feel like a broken record! Wink

Just my 2 cents.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

aklap · Joined: 02 Oct 2004 Posts: 10974 Location: WI, USA

I just wanted to link this stuff together...

Suspect CD, is dx worth it?
Compelling reason to dx by biopsy Biopsy or Not to Bipsy - That is the question.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

lisamombo · Posted: Sun Dec 31, 2006 3:52 pm Post subject:

Thanks for all of the responses. I appreciate all of the opinions. From the other links I looked at it appears that many people have similar dilemmas.
_________________
Lisa gluten free since 12/07
Mom to Noah, 9 years, Avoiding all gluten with a positive Celiac genetic test and stomach symptoms.
Mom to Hannah (5) Soon to be celiac tested.

aklap · Joined: 02 Oct 2004 Posts: 10974 Location: WI, USA

Hi Lisa,

Yes, many others are stuck in limbo not really sure which way to turn. Do you know if they ran a Total Serum IgA? This will check for an IgA deficiency. If you are IgA defic., you do not produce the IgA AB's. As you can imagine - this would skew the IgA tests.

I don't recall the numbers, but it's possible to be sero-negative and still have villi damage [celiac disease]. the TTG test you had done works well for total villous atrophy, but does not always detect minor damage.

If you do go to a gastro, I'd make sure it's one that is extremely familiar with CD and ALL of it's presentations.

You certainly could go the EnteroLab route. Be aware however, the many in medical community does not give much credence to Dr. Fine's tests. It might give assuance that you may be one the right track. Also be aware that those tests do not diagnose CD. For more info on Enterolab if you haven't seen it: Gluten Sensitivity - Before the Villi are gone

I definitely would try to get an official dx if possible. But it kind of sounds like your are stuck in the gray zone [like me]. All you can do then is follow your gut and do what you feel is right. If you feel you've reached the end of diagnostic road and the docs still don't have a clue - certainly going GF and watching his health would make a lot of sense. Listen to what your body is telling you...

I wish you well Lisa in your Knowledge Quest. Keep searching for answers. It does sound like you are on the right track.

If you want more technical info: Our Thread on Info aimed at Medical Professionals
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa