Jump to content

  • 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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    5. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.