Should I be pushing to get biopsy sooner?

[Audderpops]

Hi there,

For those who want to get to the point: Who has some understanding for celiac disease labs? Not asking for a diagnosis, just want your thoughts if this really looks like celiac disease. Should I take this seriously? One weak positive at the very last lab (put a asterisks around it).

Immunoglobulin IgA
Your Value 232 mg/dL

Standard Range 87 - 352 mg/dL

DEAMIDATED GLIADIN PEP. AB IGA
Your Value 4 units

Standard Range 0 - 19 units Negative 0 - 19 
Weak Positive 20 - 30 
Moderate to Strong Positive >30

DEAMIDATED GLIADIN PEP. AB IGG
Your Value 2 units

Standard Range 0 - 19 units
Negative 0 - 19
Weak Positive 20 - 30
Moderate to Strong Positive>30 

Tissue Transglutaminase IgA
Your Value <2 U/mL

Standard Range 0 - 3 U/mL
Negative 0 - 3
Weak Positive 4 - 10
Positive >10

Tissue Transglutaminase IgG
****Your Value 7 U/mL ****

Standard Range0 - 5 U/mL
Negative 0 - 5
Weak Positive 6 - 9
Positive >9

Longer version/explanation:

I realize this is probably a stale question in here that gets asked a lot. I just know that often when people have a medical condition like celiac disease, they research and become knowledgeable. 

G doctor is all about dog eat dog and you have to call the first of the month, right at opening 8am sharp to get in. I had a severe episode of fatigue on the 1st of September, couldn't stay awake, and when I called later that afternoon - all booked for new patients. I get to call back October 1st at 8am. 

I have doubt it's celiac disease. I do think I could have a sensitivity/intolerance because I have Hashimoto's and two years ago when I went low carb for several months I felt incredible. 

I just want to go gluten free now and see if I feel better. Because that's all I want. To be a healthy mom, wife, employee. Back to my bubbly, adventurous self.

Would it be stupid to just go gluten free now and say screw the G doc?

[trents]

Several things to consider:

1. It's not uncommon for people who do have Celiac Disease to have negative blood work but show blunted villi when an endoscopy is done. Several of our forum participants had this experience. So the biopsy is still the gold standard.

2. It is very common for people with Celiac Disease to have one or more additional autoimmune conditions. There is overlap in the gene map between celiac disease and some other autoimmune diseases such as diabetes and I think thyroid disease.

3. If you go gluten free now, if you ever decide to get a biopsy, which would require reintroducing gluten, you will likely get more intense reactions. When gluten is a regular part of our diet we build up some tolerance to it but when we have been off it for sometime and reintroduce it that tolerance is gone.

4. People who suspect they have celiac disease but never get a firm dx tend to find ways to cheat on their gluten-free diet.

[cyclinglady]

Negative results on all the tests.  I would not put a lot of emphasis on the TTG IgG as it could be slightly raised due to your Hashimoto’s.  What symptoms made you decide to get tested for celiac disease?  Or did you test before going gluten free to help with your Hashimoto’s?  Do you have other lab bio-markers that would suggest malabsorption?  Like B-12 or iron deficiencies?  

[Audderpops]

Thank you for your responses.

I have yet to go gluten free. I am tempted because of the Hashimoto's, but I don't want to ruin testing for Celiacs. The reason I got tested was for a few specific symptoms, even though I have many not connected to celiac disease.

Even though I have Hashimoto's I struggle to keep weight on, ironically. I'm 5'2 and I slipped from 101lbs to 91 lbs, without realizing it, in 1.5 months. I'm very petite so it wasn't obvious physically until I got weighted. I've managed to get to 96 lbs. as of yesterday, thank goodness. 

My potassium was low and gluclose came in as 58 non-fasting in the same lab as the ttg. All my thyroid numbers came back on point with my medication working. There's always some values a little off, I have so many labs and tests ran all the time, but never anything significant. My gluclose otherwise has always been in the 70's.

The other reasons were that back in 2018 I went on a low carb diet and most of my fatigue and "sleep disorder" disappeared (I have an undiagnosed sleep problem that looks identical to KLS, but mine normally only lasts 24 hours. It's put me in the ER bc I've been non responsive, but otherwise perfectly healthy. This is all in a very vague nutshell. Seen many doctors, still investigating).

My mom used to have very strong symptoms that are primary in Celiacs. But also others that affect the digestive system. She died unexpectedly last year, so we can't obviously can't test her.

So there are some symptoms, but I suspect they're not Celiacs. 

[trents]

I'm being kind of picky I know but it's "celiac" not "celiacs". Hope you aren't offended by the correction.

[cyclinglady]

I would get that GI appointment.  You did have a slight positive and the GI can determine if it is due to celiac disease or the test came back as a result of your Hashimoto’s.  Losing weight that fast requires some investigation.  Like you, I am little.  Never had weight gain even when running hypo.  My only symptom for celiac disease was anemia (iron-deficiency).  Right after my diagnosis, I had spontaneous vertebrae fractures from out due to undiagnosed celiac disease.  There are over 200 symptoms due to celiac disease which is a systemic disease that starts in the small intestine.  

Know that about 10% of celiacs are seronegative.  In those cases an endoscopy is ordered.  That is why it is important to see a GI.  Your one slight positive should make an insurance approval much easier.  

What did the doctor say about the low glucose?  You have one autoimmune disorder and you can develop more.  Celiac disease and Type 1 diabetes are strongly linked with Hashimoto’s.   You do not have to be young to develop Type 1 diabetes.  It also can cause fast weight loss.  

Please  keep advocating for yourself.   Something is wrong!