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Endoscopy/colonoscopy Results Are In

Momto2girls

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Momto2girls Rookie
Momto2girls
Posted

Hi everyone! My 4 year old daughter had her scope 2 weeks ago, and they said it wasn't Celiac. They did find mild inflammation in the ileum and left colon, as well as gastritis and Rare H. Pylori in the stomach. The GI doctor put her on Sulfasalazine, which is typically for IBD, but she said she does NOT think it is Crohn's? She really doesn't know what the inflammation is from!? At first I thought maybe the doctor just was overlooking the fact that it probably looks like early/mild Crohn's and has yet to cause damage. (We have lots of family history of IBD, including my brother who has Crohn's). But, the medication isn't helping -- she's still sick and getting worse. So, I am wondering if it could be gluten intolerance? Would gluten intolerance cause that type of inflammation?? I am so ugh with all of the dietary things we've tried, but if there were actual evidence then maybe we'd try doing gluten free. Do they normally see gluten intolerance when they scope? Thanks!

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1974girl Enthusiast
1974girl
Posted

I have heard some Chrones patients can heal with gluten free. My daughter had inflamation and ulcers (not from H-pylar)also in her small intestines. The first doctor came out and said it might be the start of Chrones but he wasn't sure. The second doctor said she thought the inflamation was from celiac since the biopsy showed blunting. I am hoping to have her scoped again soon to see if they are better. If your daughter is still sick, then try gluten free.

Momto2girls Rookie
Momto2girls
Posted
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I have heard some Chrones patients can heal with gluten free. My daughter had inflamation and ulcers (not from H-pylar)also in her small intestines. The first doctor came out and said it might be the start of Chrones but he wasn't sure. The second doctor said she thought the inflamation was from celiac since the biopsy showed blunting. I am hoping to have her scoped again soon to see if they are better. If your daughter is still sick, then try gluten free.

This is interesting -- there was no blunting on our biopsy, though. But the GI said she just didn't *think* it looked like inflammation from Crohn's -- although it could be a precursor? But, what she did say was that she expected to see something allergy-related (as my daughter already has severe food allergies and some sensitivities) and she was "thrown sideways" (her words) when they found this. So, maybe it could be early Celiac/gluten intolerance as easily as it could be early Crohn's -- ya know??

I just don't know?

mushroom Proficient
mushroom
Posted

I would be inclined to agree that it is just as likely to be early signs of celiac as Crohn's. Everything seems to start with inflammation before it becomes more clearly defined. Sulfasalazine is also used to treat RA, another inflammatory condition. If she is not feeling better on the sulfasalazine I would think it is time for the gluten free diet. And do it strictly, not just gluten lite.

Momto2girls Rookie
Momto2girls
Posted
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I would be inclined to agree that it is just as likely to be early signs of celiac as Crohn's. Everything seems to start with inflammation before it becomes more clearly defined. Sulfasalazine is also used to treat RA, another inflammatory condition. If she is not feeling better on the sulfasalazine I would think it is time for the gluten free diet. And do it strictly, not just gluten lite.

I do have a call into the GI doctor but they are slow as molasses, so I am wondering if you know how long we should give the sulfasalazine to kick in? I know the GI wanted her on it for a month, but I am guessing we'd see some sort of positive results sooner than that? It has been almost 2 weeks now (on Thur). It has been 2 weeks since her last clean out and it seems that we are impacted again, which is pretty typical for her lately. And the thing it she doesn't ever go but (rarely) a day without a movement. She's still going 2-6 times per day and yet an x-ray will reveal she's severely constipated? It is just lots of diarrhea at this point. And she's getting more and more fatigued. Also, she's complaining of a sore throat and has always had a very extreme thirst, which seems to be getting worse. And some joint pain here and there. Last night she was up from 2-5 AM in pain. :( I feel awful for her.

I think you might be right, it is probably time to trial gluten free -- even if we continue with the sulfasalazine until we go back on June 9. Ack!

mushroom Proficient
mushroom
Posted

Slulfasalazine does tend to be slow to have an effect - for RA they say 2-3 months. Alternating diarrhea / constipation is often a celiac symptom. It just sounds more like celiac to me than Crohn's, and often IBD is just another term for non-celiac gluten intolerance, i.e., they can't find a cause for it. Inflammation is definitely one of the early findings of celiac in an endoscopy., with or without blunting.

Momto2girls Rookie
Momto2girls
Posted
  • Author

Slulfasalazine does tend to be slow to have an effect - for RA they say 2-3 months. Alternating diarrhea / constipation is often a celiac symptom. It just sounds more like celiac to me than Crohn's, and often IBD is just another term for non-celiac gluten intolerance, i.e., they can't find a cause for it. Inflammation is definitely one of the early findings of celiac in an endoscopy., with or without blunting.

OK, sounds good! I have to say as a mom of a young child going gluten-free has always hugely intimidated me, but I know as far as a medical issue, Celiac would be the better diagnosis, as it is all controlled with diet and not all of these awful meds and surgeries! So I am kinda hoping that's what we'll find. And I'll learn to eat without gluten just like I've learned to feed her without nuts and eggs and artificial dyes!

Do you think I need to have my GI on board with this possibility, or just do it? The nurse finally JUST called me back -- and that was just to take down the info to send to the GI. Lovely. BUT my GI was out today so she asked if she could send it to another Doc (who I happen to know is the head of the group) and I am actually kind of glad b/c maybe he'll have something more interesting to say than my regular GI doc does. Ha!

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mushroom Proficient
mushroom
Posted

You do not need a doctor's prescription or permission to drop gluten from her diet. It is not something that will harm her in the least and it may well be the answer to her problems. It is certainly worth trying. I would wait and see how it goes before telling because you will only be told not to do it, if anything. (They like to be in control :D ) Keep a food and symptom diary to discuss with your GI at the next appointment. Of course, if it helps you will probably be told it is the sulfasalazine "kicking in" :rolleyes:

Momto2girls Rookie
Momto2girls
Posted
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You do not need a doctor's prescription or permission to drop gluten from her diet. It is not something that will harm her in the least and it may well be the answer to her problems. It is certainly worth trying. I would wait and see how it goes before telling because you will only be told not to do it, if anything. (They like to be in control :D ) Keep a food and symptom diary to discuss with your GI at the next appointment. Of course, if it helps you will probably be told it is the sulfasalazine "kicking in" :rolleyes:

Yes, exactly. That's more what I meant rather than needing a her permission. :) I do think it is time to try this as the allergist is ready to look for more "traditional" allergies that are causing this, but if we find that gluten is the culprit we won't have to do that testing, either, ya know?

OK, now what to feed a picky preschooler who has a nut allergy and egg allergy (can eat baked in), doesn't like meat, and can't have artificial color or dyes? Oh, and she has a tummy ache all. the. time. Luckily she does like fruits and veggies!

mushroom Proficient
mushroom
Posted

Yes, exactly. That's more what I meant rather than needing a her permission. :) I do think it is time to try this as the allergist is ready to look for more "traditional" allergies that are causing this, but if we find that gluten is the culprit we won't have to do that testing, either, ya know?

OK, now what to feed a picky preschooler who has a nut allergy and egg allergy (can eat baked in), doesn't like meat, and can't have artificial color or dyes? Oh, and she has a tummy ache all. the. time. Luckily she does like fruits and veggies!

Fruits and veggies, excellent!!! Beans, lentils, chickpeas, does she eat white fish? Rice, potatoes. You could make things interesting by making vegetable and rice fritters she could eat with her fingers. I don't know her dairy tolerance but would probably hold off lactose for now, maybe some hard cheese if she likes it. Rice cereals, use Pamela's Baking Mix for pancakes and waffles, plenty of mixes on the market for gluten free pizzas. Ease her into it and don't tell her at first it is gluten free so she won't rebel. Talk to her about it later on once you have done the switch, and why. You can also make cookies with Pamela's, and Betty Crocker makes gluten free cake mixes.

I wish you success and let us know how she is doing. :) There are lots of food and recipes ideas here on the forum. Take a look around. I believe there are also threads on what to feed a picky toddler.

Momto2girls Rookie
Momto2girls
Posted
  • Author

OK great -- she LOVES rice, and potatoes, too. In fact, we can probably make this work! We do have her off of milk (as far as drinking, not baked in), and yogurt and even mostly off of cheese. She has liked black beans in the past but has gotten pickier recently. Though she really loves edamame. Finger food sound fun. Maybe we can actually do this!? When to start!? Hmmm....

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