Test results???

[Kkbug]

I just got my celiac panel back and have a low Immunoglobulin A, Qn, Serum of 27, and high tTG-igG only indicating a weak positive of 6. My tTG-iga and everything else was negative/ normal. I was tested for food allergies including wheat at this time and they were all negative. 
 

I have a history of eosinophilia since 2011, seen multiple hematologist who saw no issues and were never concerned with this. I have had constant GI troubles for my entire life, have acid reflux, extreme bloating after every meal (also lactose intolerant and cannot eat citric acid). The current symptoms that caused these tested are all of the above plus breaking out in hives daily for months straight, joint pain and swelling, and numerous mouth ulcers. My current CB and CMP indicated malnutrition. We have so far, ruled out anything that could cause a positive ANA, Lymes, rheumatoid factor, and thyroid problems. 
 

overall, my question is should I push for further testing? Should I just try to go gluten free to see if there is any improvement? I genuinely am hitting rock bottom with how sick I have been and just want answers. I do not have the best relationship with food due to getting sick from it so frequently. Therefore, I had not ate anything prior in the day before my blood tests (4:00 pm). Not sure if this has effects of these tests, but I was not given specific instructions to eat prior. 
 

also should add, I do have family history of a family member being gluten intolerant, but had declined testing due to not wanting to continue eating gluten. 

[trents]

You ask the question of should you consider trying going gluten free but before that you also state you had declined testing due to not wanting to continue eating gluten. Those two statements seem to contradict each other. Had you started eating gluten free at some point? Skipping one day of eating will have no material effect on celiac antibody test scores. It takes a couple of weeks of being off gluten to make much a change in test scores but even cutting back on gluten consumption could have lowered your tTG-IGA score if you had been cutting back for weeks or months. Your weak positive tTG-IGG could indicate celiac disease, by the way.

However, the key to understanding hour negative test score results probably rests in the fact that you have low Immunoglobulin A. That will drive down individual IGA test scores such as the tTG-IGA and will often create false negatives. You could also be dealing with NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease and is 10x more common. There is no test for NCGS. Celiac disease must first be ruled out. Some experts believe NCGS can be a precursor to the development of celiac disease.

By the way, celiac disease is not a food allergy, it is an autoimmune disorder whose inflammatory response is triggered by the ingestion of gluten. So, a negative for wheat on an allergy test means nothing.

In order for any kind of celiac disease testing to be valid, you must be consuming 10g of gluten daily (the amount in about 4-6 slices of bread) for at least two weeks. Since your Immunoglobulin is low, you should ask for more non IGA tests to be run such as the TTG-IGG and the DGP-IGG.

By the way, are you sure your problem with dairy is the lactose? Many celiacs react the same way to CMP (Cow's Milk Protein) as they do to gluten. So it may not be the sugar component of dairy (lactose) that is the problem but the protein component (casein).

[Scott Adams]

I agree with @trents and your low total IgA means that your tTG-IgA would have been higher--and you already mentioned that it was a "weak positive." A weak positive is still a positive test result, so the likely next test would be an endoscopy to confirm celiac disease. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. 

 

 

[Wheatwacked]

Vitamin D concentrations <20 ng/mL are associated with a significant increase in the number of eosinophils in blood. 

On 9/13/2024 at 8:36 PM, Kkbug said:

I do not have the best relationship with food due to getting sick from it so frequently. My current CB and CMP indicated malnutrition. family history of a family member being gluten intolerant, but had declined testing due to not wanting to continue eating gluten. constant GI troubles for my entire life, have acid reflux, extreme bloating after every meal (also lactose intolerant and cannot eat citric acid). The current symptoms that caused these tested are all of the above plus breaking out in hives daily

 

As Scott said, "A weak positive is still a positive".

 

You could insist on an endoscopy with celiac biopsy.  One day without eating will not effect your blood work.  Weeks or months Gluten free will.  It all depends on the balance of benefits of an official diagnosis to the continued suffering while chasing the diagnosis.  

With your long history, including malnutrition and a family history, and the doctors don't know why, let us face it you are fighting a losing battle.  You have Celiac Disease, even if the doctors say no.  Some test negative and are positive biopsy, many on the forum have tested all negative, only to finally be positive up to ten years later. The ultimate test is to follow your family member's lead.  Get gluten out of your life and fix your malnutrition.  Yes it is difficult because we are engulfed in a society that considers wheat sacrosant but once you get over the addiction and clear the residual glutin from your body you will feel so much better.  Just GFD will not be enough.  Celiac Disease causes malabsorption of some twenty vitamins and minerals, explaining your malnutrition.  It is the malnutrition that will kill you.  Starting with your seriously compromised immune system vitamin D, evidenced by your eosiniphil count that the doctors can't account for.

Want proof?  Get tested for vitamin D, Thiamine, homocysteine and Urinary Iodine Concentration for starters.  It will show if you are deficient in vitamin D, B1, choline, B12, B6, folate and iodine.  You have to ask for these, doctors don't normally check.

You might want to see a dermatologist familiar with dermatitis herpetiformis, dermatitus herpetiformus as it is the dermatological symptom of Celiac Disease.  Many with dermatitis herpetiformis are seronegative and biopsy negative.  Some with dermatitis herpetiformis find that iodine can exasperate the breakouts so worth testing for.  The biopsy has to be taken in clear skin, near the pustules, not like other derm biopsies, so you need to find a dermatologist familiar with the procedure.

Quote

Dermatitis herpetiformis (dermatitis herpetiformis) is the skin manifestation of celiac disease, presenting with a blistering rash typically on the knees, elbows, buttocks and scalp. In both dermatitis herpetiformis and celiac disease, exposure to dietary gluten triggers a cascade of events resulting in the production of autoantibodies against the transglutaminase (TG) enzyme, mainly TG2 but often also TG3. The latter is considered to be the primary autoantigen in dermatitis herpetiformis. Antibody Responses to Transglutaminase 3 in Dermatitis Herpetiformis

Here is an odd symptom I had.  I wear contact lenses (since 1972) and I always had to take them out every two weeks to clean "protein build up".  Not long after starting GFD at age 63, no more protein buildup.  I go on average 6 months now without taking them out.  Fibromyalgia gone.  I am pretty sure the gluten was incorporated in muscle and joints and was being attacked by the out of control T and B cells (not enough vitamin D to control them).

Can I prove it? No, but I no longer have pain. That's some kind of proof.

I am sorry if it sounds like bad news; but you'll thank me later.