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Lymph Nodes


mosaicmom

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mosaicmom Rookie

Reading about lymph system in GI tract, but we're not there yet with knowing.

Very concerning to see dd has had lymph node in each arm swollen and painful over the last 2-3 months.

She never told me, but she's had one swollen near her groin.

My worry is b/c of the occurrence of lymphoma with Celiac's.

Could it be something adrenal related? How would a doctor know?

Sorry for a similar post in one of my first posts in another thread. I wanted to separate this one symptom from the rest and see how familiar it is to anyone.


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ShayFL Enthusiast

If lymph nodes stay swollen for more than a week, you should go to see a doctor. It could just be an infection. They can test for that. And if not an infection, they can do a needle biopsy to find out. Please do not let fear keep you from acting. You always want to catch things as early as possible. Likely it is nothing, but you need to find out.

A friend of mine just took her daughter to the doctor a few weeks ago because she had 3 swollen lymph nodes on her neck. They ran tons of blood work and everything came back fine. They scheduled a biopsy, but before that date came, two had gone away and the other was shrinking. Turns out to have been nothing. But they were going to do the right thing.

You need to talk to a doctor.

mosaicmom Rookie

I agree, absolutely.

To justify a bit, I am dealing with an inadequate military health system that has failed me in this process for over 3 years- going on 4 with a diagnosis. We ran treating allergies here, mental health over at psychiatry, GI many times for no real outcome except for "wait and see", no one listened. I don't trust them. I'm not being overly whiny- they really have blown me off- her off, really.

Once the dx process is stable and we have a better idea of what we're looking at, hopefully the scope is enough (upper and lower), I am switching to Johns Hopkins Health, which is an option. It gets no better than that. If I switched my daughter now, the waiting game continues and I push this back further.

It's being brought up at the pre op on Wednesday this week.

I asked here because I've come to trust those who've had to go through it more than I do the incompetent doctors we've suffered through. Having a general idea when you walk in their door helps, knowing how things might be interconnected helps you do validate why you're asking them to investigate further. I've noticed I've needed to arm myself this way with them.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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