Weak Positive Test

[SuzanneL]

I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 

[trents]

Welcome to the forum, @SuzanneL!

Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.

[SuzanneL]

It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 

[trents]

Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.

[knitty kitty]

@SuzanneL,

It's common for Celiac people to be misdiagnosed with IBS (like me), postponing a correct diagnosis for years.  Yes, do get further testing, an endoscopy, and a DNA test for Celiac genes.  

Also ask for an Erythrocyte Transketolase test to check for Thiamine deficiency.  Thiamine deficiency symptoms include persistent nausea, and abdominal pain.  Thiamine deficiency can also cause gallbladder dysfunction, causing pain in upper right quadrant.  Deficiencies in other B vitamins like Niacin can cause low stomach acid which most doctors mistakenly treat with antacids, further lowering the absorption of Niacin and other essential nutrients.  Keep in mind proton pump inhibitors, frequently used for acid reflux, cause inflammation and damage to the small intestine on top of the damage caused by Celiac Disease.  

Keep us posted on your progress!

[SuzanneL]

Thank you so much! I just got my endoscopy set up yesterday. May 29th. I hate to wait that long but something about insurance and the current medicine I'm on. Omeprazole. She said I had to wait eight weeks. I just want to know. If I'm not Celiac, I'm really starting to think I'm definitely gluten sensitive. Something is not right. 

[knitty kitty]

@SuzanneL,

Be sure to eat a sufficient amount of gluten between now and your endoscopy.

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!

[SuzanneL]

Oh wow, I didn't know that. Thank you for all of that. I'll check it out now. 

[Rhonda2424]

I’ve recently had a gluten test by my allergist and he says I have an allergy to wheat, barley and rye.  The test results say the level of gluten is between 9 and 352 and I was at a 359.  My primary care wanted to run her own test which she did but I was emailed to schedule a new lad draw because the lab didn’t run it properly.  I’ve been off gluten for 3 weeks and my labs are being drawn in 4 days.  Do I need to resume eating gluten to get an accurate test result. 

[Wheatwacked]

Yes.  Children recover more quickly than adults.  Adults take 6 months to several years to heal, depending on your vitamin status.  If you eat gluten until the draw it may still show positive.  Contact the doctor and let her know you've been gluten free.  She may want to put it off a few weeks if you can tolerate it.

What test did the allergist do? What are your symptoms? It is much more likely to be Celiac or Non Celiac Gluten Sensitivity considering you are positive for wheat, barley and rye.

After 10 years gluten free and lots of vitamins and minerals to promote healing, when I eat gluten I have allergy type symptoms.  I succombed to a beautiful chocolate cake at Golden Coral restaurant that looked exactly like the cake my wife would make for my birthday.  She passed of ovarian cancer in 2005 and the nostalgia overrode my knowledge of the results. Anyway about a week later I began sniffling and burning eyes, a reaction that could be attributed to allergy, but I know better.  It lasted about a week. Your allergist may want to treat for allergy, but don't waste your time and money.  Celiac Disease and NCGS can only be treated by complete avoidence and replenishing the difficient vitamins and minerals.  It is an autoimmune response to gluten, not an allergic response, Celiac Disease can mimic the symptoms of over 200 other diseases.

 

 

Edited April 21 by Wheatwacked

[trents]

2 hours ago, Rhonda2424 said:

I’ve recently had a gluten test by my allergist and he says I have an allergy to wheat, barley and rye.  The test results say the level of gluten is between 9 and 352 and I was at a 359.  My primary care wanted to run her own test which she did but I was emailed to schedule a new lad draw because the lab didn’t run it properly.  I’ve been off gluten for 3 weeks and my labs are being drawn in 4 days.  Do I need to resume eating gluten to get an accurate test result. 

Welcome to the forum, @Rhonda2424! First, let me explain that celiac disease is not an allergy, it is an autoimmune disorder triggered by the consumption of gluten. So, allergy testing cannot be used to diagnose celiac disease. Neither is NCGS (Non Celiac Gluten Sensitivity) an allergy but medical science has yet to pin down the details of the immune system pathway it engages. Having said that, it is certainly possible to have an allergy to gluten as is the case with any food protein. So, like Wheatwhacked, I'm wondering what kind of testing your allergist ordered and if the tests he/she ordered were for celiac disease or for wheat allergies. On the other hand, your primary care doc probably ordered blood antibody tests for celiac disease. You need to be eating an amount of gluten daily equivalent to 4-6 slices of bread for at least three weeks leading up to your next round of testing for celiac disease, aka, gluten intolerance. Otherwise, the testing will likely be invalid.

[Rhonda2424]

Thanks for all the responses.  I have symptoms similar to IBS.  Can’t hold my stools especially in the morning.  Nausea, bloating and gassy.  Pasta seems to be my worst trigger.  A few years back I had an endoscopy and the doctor said my food didn’t seem to be digesting properly.  He tested for IBS but determined I didn’t have it.  I have had a hornless itchy rash for a year now that 6 doctors couldn’t identify which is why I turned to an allergist.  My primary care finally agreed to do a celiac test but as stated above the lab didn’t have the test kit for it.  I think I’ll put if off for a couple of weeks so I can get back on gluten.  I also have runny nose and watery eyes.

That was suppose to be horrible rash not hornless.  The rash is everywhere and looks like dermatitis herpetiformis.

[Scott Adams]

19 hours ago, Rhonda2424 said:

I’ve recently had a gluten test by my allergist and he says I have an allergy to wheat, barley and rye.  The test results say the level of gluten is between 9 and 352 and I was at a 359.  My primary care wanted to run her own test which she did but I was emailed to schedule a new lad draw because the lab didn’t run it properly.  I’ve been off gluten for 3 weeks and my labs are being drawn in 4 days.  Do I need to resume eating gluten to get an accurate test result. 

Feel free to share your test results here, along with the reference ranges for the tests, and I think you need to delay this test and do a proper gluten challenge.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Rhonda2424]

Thank you