Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Endoscopy/colonoscopy Results Are In

Momto2girls

Recommended Posts

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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
  • Author

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
  • Author

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!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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
  • Author

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....

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,794
    • Most Online (within 30 mins)
      7,748
    MarciO
    Newest Member
    MarciO
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      Hi Trents-Thanks for reading and sharing insight.  We need all the help we can get and it's super appreciated.  She is currently dairy, soy and oat free and those have mostly been completely excluded from her diet since the diagnosis (we tried going back on dairy and oats at different times for a bit, didn't see a significant difference but have now cut out again just to be extra safe since her issues are so persistent.  We did cut eggs out for about 3 months and didn't notice significant difference there, either.  The only one we haven't specifically cut out completely for any portion of time is corn, however, we've kept it minimal in all of our diets for a long time.  She definitely goes 3-4 weeks without any corn products at times and still has issues, but I'm guessing that's not long enough to confirm that it isn't causing issues.   We could definitely try to go longer just to double check.  Thanks again!   
    • Jordan23
      Potato Intolerance

      By Jordan23 · Posted

      Ok so know one knows about cross reactions from yeast,corn, potatoes, eggs, quinoa ,chocolate, milk, soy, and a few more I forgot.  There all gluten free but share a similar structure to gluten proteins. I use to be able to eat potatoes but now all of a sudden I was stumped and couldn't figure it out when I got shortness of breath like I was suffocating.  Then figured it out it was the potatoes.  They don't really taste good anyways. Get the white yams and cherry red 🍠 yams as a sub they taste way better. It's a cross reaction! Google foods that cross react with celiacs.  Not all of them you will cross react too. My reactions now unfortunately manifest in my chest and closes everything up . Life sucks then we die. Stay hopeful and look and see different companies that work for you . Lentils from kroger work for me raw in the bag and says nothing about gluten free but it works for me just rinse wellllll.....don't get discouraged and stay hopeful and don't pee off god
    • K6315
      Newly gluten free… withdrawal?

      By K6315 · Posted

      Hi Lily Ivy. Thanks for responding. Did you have withdrawal? If so, what was it like and for how long?
    • trents
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By trents · Posted

      Welcome to the forum, @Doris Barnes! You do realize don't you that the "gluten free" label does not mean the same thing as "free of gluten"? According to FDA regulations, using the "gluten free" label simply means the product does not contain gluten in excess of 20 ppm. "Certified Gluten Free" is labeling deployed by an independent testing group known as GFCO which means the product does not contain gluten in excess of 10 ppm. Either concentration of gluten can still cause a reaction in folks who fall into the more sensitive spectrum of the celiac community. 20 ppm is safe for most celiacs. Without knowing how sensitive you are to small amounts of gluten, I cannot speak to whether or not the Hu Kitechen chocolates are safe for you. But it sounds like they have taken sufficient precautions at their factory to ensure that this product will be safe for the large majority of celiacs.
    • Doris Barnes
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Doris Barnes · Posted

      Buying choclate, I recently boght a bar from Hu Kitchen (on your list of recommended candy. It says it is free of gluten. However on the same package in small print it says "please be aware that the product is produced using equipment that also processes nuts, soy, milk and wheat. Allergen cleans are made prior to production". So my question is can I trust that there is no cross contamination.  If the allergy clean is not done carefully it could cause gluten exposure. Does anyone know of a choclate brand that is made at a facility that does not also use wheat, a gluten free facility. Thank you.
×
×
  • Create New...