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A Little Confused At 3 Month Follow Up Visit

Roda

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Roda Rising Star
Roda
Posted

I just had my three month follow up appointment yesterday with the GI doctor. He asked me how I was doing on the diet and I said fine. The first month was a learning period, but I think I am getting the hang of it. I had one mess up around Jan. 19th. I had very vague gi symptoms to begin with. Acid reflux, low iron/anemia, and only later learned that the constant bloating/constipation (which I thought was normal for me had it all my life) were symptoms. I feel lucky I was not very sick just knew something was off. Anyway, I had an IgA tTG that was around 71 or so. My biopsy stated: "The biopsy demonstrates lamina propria expansion with predominately chronic inflammation consisting of lymphocytes and plasma cells. Neutrophils are also present within the lamina propria and crypts. Villi blunting with focal crypt hyperplasia is seen. Increased intraepithelial lymphocytosis is mild and is below that which would be expected in celiac disease. However, serologic testing may be warrented if there is clinical suspiciion of a gluten sensitive enteropathy as serologic changes precede clear cut histologic changes. No evidence of parasites is seen. Clinical correlation is required." He told me that the duodenal biopsy was consistent with early celiac sprue. Could either repeat celiac sprue blood screen or try gluten free diet for 3 months and see him after. That was enough evidence for me, so I did not repeat any tests and went strainght gluten free. Except for the low iron and newly discoverd vitamin d deficiency, all my other symptoms have resolved. I asked if I would need more celiac blood work to see if the tTG antibody was coming down. He said that they really don't change and a repeat biopsy in a year or two would let him know. He said it would be too early now to see any changes, that I needed to give the diet at least 6 months, and if I was eating balanced that the iron and other things would improve. I asked about trying iron supplements again and said for me to wait another three months since I had stomach trouble from it before. I'm OK with the wait and see with the iron, but am suspucious about the comment on the tTG. He is going to do blood work for nutritional deficiences when I go back in April, again to let me heal naturally from the diet. I like that he wants to take a more natural approach, since I was not that sick to begin with. Any thoughts about repeating the tTG or just wait for another biopsy down the road. Thanks.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It does take a while for the antibodies to come down and most doctors will check them at 6 months. The choice of whether to rebiopsy is IMHO up to you. If you are still having issues then it may be needed to rule out other conditions but if you blood levels go down and you have fully healed then the rebiopsy isn't something that is absolutely needed. There are even some doctors who are now going off positive blood work and not using the biospy for diagnosis.

sbj Rookie
sbj
Posted

"I asked if I would need more celiac blood work to see if the tTG antibody was coming down. He said that they really don't change and a repeat biopsy in a year or two would let him know. He said it would be too early now to see any changes, that I needed to give the diet at least 6 months, and if I was eating balanced that the iron and other things would improve. . . . Any thoughts about repeating the tTG or just wait for another biopsy down the road. Thanks."

I think your doctor is right about most things here but I disagree with him about the need for follow-up bloodwork. My gastro has told me that the bloodwork would be helpful. I have read this elsewhere:

Open Original Shared Link

"tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward
*Daniella* Apprentice
*Daniella*
Posted

This is a good question.

I had a celiac panel done 3 months after diangoses. I just received the results back and they said everything is within normal ranges. Is that normal to be within normal ranges so soon?

ravenwoodglass Mentor
ravenwoodglass
Posted
This is a good question.

I had a celiac panel done 3 months after diangoses. I just received the results back and they said everything is within normal ranges. Is that normal to be within normal ranges so soon?

Sure. Alot depends on how high the antibodies were to begin with and everyone is an individual. It also shows you are doing a real good job with the diet. Hopefully you are feeing better too.

Roda Rising Star
Roda
Posted
  • Author

I think your doctor is right about most things here but I disagree with him about the need for follow-up bloodwork. My gastro has told me that the bloodwork would be helpful. I have read this elsewhere:

Open Original Shared Link disease...lowUpTests7.pdf

"tTG-IgA testing should be used for follow-up care. Interpreting this test result is straightforward

sbj Rookie
sbj
Posted
I'll be curious to see if the IgA tTG comes down.

I'm actually quite eager myself to make it to 6 months so that I can be re-tested. I want to see if I have made any progress. While I have been very strict in my diet I have eaten products that are made on wheat lines and wheat equipment and such. I've also eaten out and I haven't paid too much attention to cross contamination. I mean, I've been diligent but I haven't been extreme. So I am a little concerned that some minute bits of gluten have gotten through. If so, those minute bits are enough to set off my auto-immune system. It will be very interesting to see the test results . . .

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Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

My doctor told me to come back in a year. I'm going to go to my family doc to see if she will run the bloodwork. I really don't want to go back to the gastro unless I have a problem (I didn't think she was that good).

I think it would have been nice to be re-tested at 6 months just to make sure I was doing the diet correctly.

curiousgeorge Rookie
curiousgeorge
Posted

I'm going to ask for a repeat on my next appt. I really want to see where my TTG is at. For me its almost lke getting an A on a test if its low it means I've been dilligent :) Or so I'm hoping!

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