how long should i do gluten challenge before getting the blood tests?

[kitty4751]

If I have been doing the gluten free diet for exactly 8 weeks now, how many weeks do I need to eat gluten daily in order to have an accurate blood test? How much do I need to eat per day? 

In August 2016 I had the ttg-iga blood serum test and got a 4.0 units on a scale where > 4.0 means antibody detected. I had the endoscopy in August and was told I have gastritis, duodenitis and intestinal metaplasia, but no villi flattening. Yesterday, I went digging in my health online health records and found one from 2012 (!!) that showed a ttg-iga serum test that I got 38.3 units on a scale of <20 is negative, 20-30 weak positive, >30 strong positive. I was still seeing my pediatrician and SHE. NEVER. SHOWED. ME. THESE. RESULTS. I had gone to her complaining of awful constipation, and was told everything was fine in the tests. Even my mom remembers being told the results were fine. It's clearly flagged bright red that I got a high reading four years ago.

So now I requested to retest and get to the bottom of this! Any suggestions are welcome. I am tired of the health care system failing me. If anyone has a reco for a specialist in the greater philadelphia area, I would be interested. thanks! 

[squirmingitch]

This is the recommendation by the University of Chicago Celiac Disease Center

Open Original Shared Link

 

This is a post from 2006 so 10 years ago but I checked & he's still practicing there:

In the last post on the above thread, there is another doc someone mentions.

Here's a link to the doctors site

Open Original Shared Link

You can search the doctors people have listed here:

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

You can also inquire of the Greater Philadelphia Celiac Support Group. They have a facebook page but for some weird reason I'm not able to imbed the link here so just Google it yourself. They probably have a list of GI docs members have used.
 

It is incomprehensible that your Ped GI did not tell you about that test result!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[kitty4751]

@squirmingitch Thank you so much! Oh I know, my jaw literally hit. the. floor. when I saw that yesterday. I was starting to think I'm a hypochondriac, but no its just doctors hiding results from me -___- She wasn't a specialist, just a regular ped. maybe she just wasnt informed enough. I'll never know. 

[squirmingitch]

4 minutes ago, kitty4751 said:

@squirmingitch Thank you so much! Oh I know, my jaw literally hit. the. floor. when I saw that yesterday. I was starting to think I'm a hypochondriac, but no its just doctors hiding results from me -___- 

You're very welcome!

It's weird that the test in 2012 had such a high positive but the one this year was even steven. You do need to get to the bottom of this one way or the other. 

Unfortunately what the Ped doc did is not all that uncommon. Between my husband & myself, we've found test results that were red flags but the doc had never mentioned them and we had to bring it up after reading the tests. I think they go through those things so fast that they don't really even take a good look at them. Still, there is no excuse!

[kitty4751]

for anyone interested in helping me decipher my pathology report, i could use the help:

 1. Duodenum, biopsy:
- Small intestinal mucosa with no specific pathologic change, see note.
2. Duodenum, bulb, biopsy:
- Duodenal mucosa with no specific pathologic change, see note.
3. Stomach, antrum, biopsy
- Gastric antral mucosa with intestinal metaplasia, negative for dysplasia
and H pylori (H&E stain), see note.
4. Gastroesophageal junction, biopsy:
- Squamous and gastric cardio-oxyntic type mucosa with mild chronic
inflammation; negative for intestinal metaplasia and
dysplasia, see note.

The initial report/ findings stated: irregular Z line with concern for short tongue of salmon colored mucosa, mild gastritis was found in the antrum, there was evidence of duodenitis in the duodenal bulb. 

There were 2 duodenal bulb biopsies, 4 duodenal biopsies, 4 antral biopsies and 2 gastroesophageal junction biopsies. 

 

[squirmingitch]

It looks negative for celiac to me but I willingly admit I'm not great at reading those things.

[cyclinglady]

13 hours ago, kitty4751 said:

for anyone interested in helping me decipher my pathology report, i could use the help:

 1. Duodenum, biopsy:
- Small intestinal mucosa with no specific pathologic change, see note.
2. Duodenum, bulb, biopsy:
- Duodenal mucosa with no specific pathologic change, see note.
3. Stomach, antrum, biopsy
- Gastric antral mucosa with intestinal metaplasia, negative for dysplasia
and H pylori (H&E stain), see note.
4. Gastroesophageal junction, biopsy:
- Squamous and gastric cardio-oxyntic type mucosa with mild chronic
inflammation; negative for intestinal metaplasia and
dysplasia, see note.

The initial report/ findings stated: irregular Z line with concern for short tongue of salmon colored mucosa, mild gastritis was found in the antrum, there was evidence of duodenitis in the duodenal bulb. 

There were 2 duodenal bulb biopsies, 4 duodenal biopsies, 4 antral biopsies and 2 gastroesophageal junction biopsies. 

 

Were these the result of a second biopsy done in 11/2016 or 12/2016?

[kitty4751]

Those are from August 2016 from when I had the ttg iga come back as 4.0 (>=4 was weak positive).

[kitty4751]

Update-

I met a new GI doc and I told her my long story. When I got to the part about my pediatrician not sharing the positive ttg iga test results with me she was shocked. So she is going to recheck my blood for ttg-iga and EMA-iga after I eat gluten again for three months. She also wants me taking nexium until my repeat endoscopy next summer for the intestinal metaplasia. I really don't want to take that. 

 

....to be continued!