more celiac questions

[ktgrok]

I'm going to discuss it with his doctor, but yeah, I think if there are no gluten ingredients at all we will do it right now. He had SIX sausage links for breakfast!!!!! And a gluten free pancake and a gluten free waffle. That is the most he has eaten in I don't know when. I'm amazed. 

[Monica_in_Switzerland]

4 hours ago, Ktgrok said:

I'm going to discuss it with his doctor, but yeah, I think if there are no gluten ingredients at all we will do it right now. He had SIX sausage links for breakfast!!!!! And a gluten free pancake and a gluten free waffle. That is the most he has eaten in I don't know when. I'm amazed. 

 

That makes me so happy to hear it!  

For us, moving to gluten-free caused IMMEDIATE improvement.  DS's main symptom was pain, and within 24 hours, it was gone.  Within a week, dark eye circles were gone, nightmares were gone, and obsessive nail chewing and clothing hem chewing were mostly gone.  (He's still a nail biter, but not with the same frequency/intensity, and he has never gone back to hem chewing, thankfully)

[cintinative]

1 hour ago, Monica_in_Switzerland said:

 

That makes me so happy to hear it!  

For us, moving to gluten-free caused IMMEDIATE improvement.  DS's main symptom was pain, and within 24 hours, it was gone.  Within a week, dark eye circles were gone, nightmares were gone, and obsessive nail chewing and clothing hem chewing were mostly gone.  (He's still a nail biter, but not with the same frequency/intensity, and he has never gone back to hem chewing, thankfully)

 

We pretty much did too, in terms of stomach pain, which was becoming worse and affecting sleep. I think we saw a vast improvement in three days. I never thought of the clothing chewing as a symptom--we figured that was from school (we pulled him after that year), but wow--yes, that could have been one of his symptoms too. 

I almost wonder if, although he wasn't expressing it verbally, the OP's son was experiencing discomfort after eating.  Maybe he couldn't quite make the connection of why he felt yucky. It does happen.  When my son was still sick and before diagnosis, his tummy would hurt at night and we would give him (gasp) wheat crackers. Little did we know we were making things worse.  He never made the connection himself between what he ate and feeling bad, partly because I think by that point his Celiac was full blown and the villi were blunted. He just felt bad all the time.  We had no idea--we thought it was from too much antibiotics (he was constantly sick with an ear infection or strep because his immune system couldn't fight them off).  

I am SO glad you checked this out OP.  I really hope some of the other questions you had are answered as his body begins to heal.

[Pen]

Friends who went off gluten due to one family member needing that told me there was a lot of emotional dysregulation, tantrums, irritability... from all family members, not just the identified celiac patient, in first month.  

A heads up in case you experience this.  

[kbutton]

On 2/2/2019 at 2:14 PM, Ktgrok said:

That second article also seems to confuse killing bacteria with removing bacteria. Totally different. If you boil something you can kill it, but it doesn't mean it isn't still there. It's there, just dead. With gluten, I'm not sure how high it has to get to be denatured but I know it's higher than boiling given that cooked pasta still has gluten, lol!

So boiling gluten to remove is about the dumbest thing I've heard, and makes me doubt whatever else he's trying to say. Maybe he knows math, but he sure doesn't know biology. 

I have been round and round in my head about hot water/boiling water, effective washing, etc. even before seeing it mentioned here. 

I think you are right on this; however, I do think that boiling water can be an effective tool to remove particles of food, depending on what is being washed, etc. Water is called the universal solvent for a reason. Starches often work lose with hot water in a way that they don't with cooler water. Clearly, some things come clean more easily than others (smooth mixing bowl vs. colander with a million nooks and crannies). I am personally comfortable with several rounds of thorough, hot washing by people who are careful (my mom post-cataract surgery vs. my 11 year old, like ever, lol!). I have specific duplicates of some cooking items because I can't trust the people in my house to always be thinking about this (I've seen their attention to detail on things like aiming at the toilet), and because the level of scrubbing and number of washes it would take to make me okay with something like a colander not being GF is more than I have time for or want to spend effort on. 

That said, I think the guy was a bit cavalier in his article, and I think that he is not really making an effective argument as a result.

[ktgrok]

On 2/3/2019 at 1:59 PM, Monica_in_Switzerland said:

 

That makes me so happy to hear it!  

For us, moving to gluten-free caused IMMEDIATE improvement.  DS's main symptom was pain, and within 24 hours, it was gone.  Within a week, dark eye circles were gone, nightmares were gone, and obsessive nail chewing and clothing hem chewing were mostly gone.  (He's still a nail biter, but not with the same frequency/intensity, and he has never gone back to hem chewing, thankfully)

Oh wow! He has the dark circles, nightmares, nail chewing (even toenails..ugh), and clothing chewing!!!! 

On 2/3/2019 at 3:28 PM, Pen said:

Friends who went off gluten due to one family member needing that told me there was a lot of emotional dysregulation, tantrums, irritability... from all family members, not just the identified celiac patient, in first month.  

A heads up in case you experience this.  

Um, were you spying on us yesterday and today? Sigh. We took the kids to Gatorland yesterday for DD9 birthday and yeah...it reminded me of theme park trips with my ASD kid when he was younger. Lots of meltdowns, confusion as to what we were doing/promising, etc. I'm trying to remember that some of this is just plain old stress related. 

[nevergiveup]

We are not gluten free here but I like to cook gluten free on occasion, mainly because I don't think it's a good idea to eat the same things all the time and also because there is a huge world of food out there that most Americans don't even know about (visit an International grocery store--it's also a terrific place for gluten free flours and noodles).

Made a fabulous gluten free coffee cake yesterday (Americas Test Kitchen:How Can It Be Gluten Free cookbook)--it was better than any with gluten I have made in the past.

The whole family likes cauliflower pizza crust, too, and there was a pizza crust that used {I think} garbanzo bean flour that my gluten addicted son said he liked better than traditional crust.  

[Junie]

On 2/3/2019 at 3:28 PM, Pen said:

Friends who went off gluten due to one family member needing that told me there was a lot of emotional dysregulation, tantrums, irritability... from all family members, not just the identified celiac patient, in first month.  

A heads up in case you experience this.  

Oh, I forgot about this.

My first few days off gluten were awful.  Not that I have any experience with drug use, but it felt like what I imagine drug withdrawal would look like.  I was a mess.

[lmrich]

I am not celiac but have a true wheat allergy and am, apparently so sensitive, I can not touch it or breathe it in without a reaction. BUT it was hard to find because I had stopped eating wheat since I knew it bothered it me. Long story, keep your other children eating wheat until their testing is complete or you will not get an accurate reading. 

Reading labels is hard; I spend forever at the grocery now. Hopefully, you will get the hang of it quickly. 

[ktgrok]

Tried another gluten free pizza today, it was fine, but he barely ate any. He'd requested it but then just couldn't eat it. Given the silent reflux I'm betting the sauce bothered him, although eh couldn't express it. He had full fat plain greek yogurt with honey instead, same as he had for breakfast. He pretty much has only had that and cake today. Sigh. (his enzyme panel showed he has normal levels of lactase, his only normal carbohydrate enzyme, so I felt good about the yogurt)

[Jean in Newcastle]

16 minutes ago, Ktgrok said:

Tried another gluten free pizza today, it was fine, but he barely ate any. He'd requested it but then just couldn't eat it. Given the silent reflux I'm betting the sauce bothered him, although eh couldn't express it. He had full fat plain greek yogurt with honey instead, same as he had for breakfast. He pretty much has only had that and cake today. Sigh. (his enzyme panel showed he has normal levels of lactase, his only normal carbohydrate enzyme, so I felt good about the yogurt)

Sounds like the other pizza you had was the winner. 

[ktgrok]

6 minutes ago, Jean in Newcastle said:

Sounds like the other pizza you had was the winner. 

He didn't actually finish that one either. Im betting that pizza sounds good to him, but once eating it the sauce is bothering his reflux. Whereas, he doesn't really want peanut butter and jelly, but if I make it he ends up eating all of it. I'm going to ask the GI doc when we see her tomorrow if I should be giving anything for the reflux. 

Edited February 4, 2019 by Ktgrok

[Jean in Newcastle]

2 minutes ago, Ktgrok said:

He didn't actually finish that one either. Im betting that pizza sounds good to him, but once eating it the sauce is bothering his reflux. Whereas, he doesn't really want peanut butter and jelly, but if I make it he ends up eating all of it. I'm going to ask the GI doc when we see her tomorrow if I should be giving anything for the reflux. 

My dd with Celiac has gf pizza with no sauce or with a gf white sauce. 

[Pen]

A few days of soothing bland food like yoghurt probably won’t hurt him.  Can / will he eat eggs?

my best things for reflux are half and half , tums , and thayers slippery elm Lozenges.    Also avoidance of any acid or tomato or chili type food past lunch time.  

[ktgrok]

1 hour ago, Pen said:

A few days of soothing bland food like yoghurt probably won’t hurt him.  Can / will he eat eggs?

my best things for reflux are half and half , tums , and thayers slippery elm Lozenges.    Also avoidance of any acid or tomato or chili type food past lunch time.  

no, no eggs really. Not without ketchup on them which would defeat the point of no acid, and even then eh'd barely eat them. I'm going to get more yogurt tomorrow! 

[ktgrok]

He did also have a big bowl of his favorite sherbet tonight. But man, behavior wise he was a nightmare today. And yesterday wasn't great either. But by tonight he was barely coherent.....just oppositional and nonsensical. Poor kid. He had a big day yesterday at Gatorland, and then had trouble falling asleep (normal lately), and then woke me up at 5am because he was having intrusive thoughts, fell back asleep in our bed, then was still asleep at 9:15 when I woke him up. Had an x-ray today to look for /rule out enlarged adenoids (I'm guessing that will show nothing), and maybe it was just stress of new diagnosis plus exhaustion, or maybe it's PANDAS and due to strep exposure - the toddler has something on her face that may be impetigo, but is so minor I can't bring myself to set up yet ANOTHER medical visit. He also had urinary issues again today and I left a message at the pediatrician asking if his urine culture results are back, they should be for heavens sake, but it could just be PANDAS or anxiety or who the heck knows what. No burning, just feeling like he still needs to go after emptying his bladder. 

I ended up giving him some bendryl before bed, an melatonin, and he blessedly fell right asleep. 

[kbutton]

Could he have some mineral deficiencies due to malabsorption and understandably picky eating? I have found that I need to supplement most minerals, and eating foods high in those minerals DOES NOT help. I tend to get a host of muscle spasms and nerve issues (not sure how to describe them) if I am not actively supplementing with at least magnesium and potassium. I go from insomnia and restlessness all night to sleeping like a rock. I go from bladder spasms to relatively calm bladder and many fewer trips to the bathroom. The potassium I can sort of understand--I have bouts of fluid retention, and then it will all leave my body at once (no rhyme or reason to this, but potassium helps keep this on an even keel). Obviously, potassium is known to get low when a person uses diuretics, so I assume my low potassium is related to that. However, I have no explanation for why the potassium would help with the fluid balance to begin with. It's like it's both the chicken and the egg. I have also had super cravings for foods with certain minerals (for about a year and a half, I ate brazil nuts by the handful daily, and then suddenly, I didn't "need" them anymore--they are sky high in selenium).

More food intolerances yet to be discovered? I have more reflux from too many carbs or from food sensitivity triggers (I have constantly high histamine levels) than from acidic food.

[kbutton]

Oh, and I would think that using an H2 blocker for a while would be okay. Run it by the doc, but I can't imagine it would hurt to have the GERD under control and some antihistamines help with anxiety. Maybe the doc will suggest taking regular antihistamines daily for a bit to see if the anxiety is histamine-related.

[Pen]

16 hours ago, Ktgrok said:

no, no eggs really. Not without ketchup on them which would defeat the point of no acid, and even then eh'd barely eat them. I'm going to get more yogurt tomorrow! 

 

I was asking about eggs because I have a GF cookie recipe with egg whites and have added yolks to pumpkin pie (can be crustless custard for GF) for ways to get some nutrition into “dessert” foods.

Edited February 5, 2019 by Pen

[ktgrok]

So she doesn't think he needs medication for the reflux but I can give some if I need/want to. In good news, he gained half a pound with a lot of effort on my part, lol. 

We have checked levels of pretty much everything, including magnesium and potassium and they were normal. He was low D and low ferritin and that was it, but D is back up now, thankfully. 

She also gave the okay for NSAIDs if  need be, or steroids if the PANDAS clinic prescribes them. We will try to hold off until we see the PANDAS people, but good to know. 

Oh, and she's arranging for us to see a nutritionist familiar with GI stuff, at the children's hospital. 

Edited February 5, 2019 by Ktgrok

[Jean in Newcastle]

1 hour ago, Ktgrok said:

So she doesn't think he needs medication for the reflux but I can give some if I need/want to. In good news, he gained half a pound with a lot of effort on my part, lol. 

We have checked levels of pretty much everything, including magnesium and potassium and they were normal. He was low D and low ferritin and that was it, but D is back up now, thankfully. 

She also gave the okay for NSAIDs if  need be, or steroids if the PANDAS clinic prescribes them. We will try to hold off until we see the PANDAS people, but good to know. 

Oh, and she's arranging for us to see a nutritionist familiar with GI stuff, at the children's hospital. 

My advice is to just give it time.  My dd's stomach and intestines were quite inflamed even for quite some time after going gf.  It just took time for everything to settle down.  So irritating foods might not be a problem once the stomach etc. isn't raw anymore but now - while it is still raw?  Owie.  (Dd can only now have tomato a year after going celiac level gluten free,)

[cintinative]

hey @Ktgrok wondering how your boy is doing.  I am really hoping Jean is right and that the reflux will also improve as he heals--it makes sense.

Also someone mentioned this, but often times Celiacs struggle with dairy initially because of all the damage. My friend had this problem, but after awhile on the gluten-free diet, she was able to return to dairy without a problem. I don't totally understand it, but sometimes that dairy sensitivity and Celiac go together. 

[ktgrok]

Just now, cintinative said:

hey @Ktgrok wondering how your boy is doing.  I am really hoping Jean is right and that the reflux will also improve as he heals--it makes sense.

Also someone mentioned this, but often times Celiacs struggle with dairy initially because of all the damage. My friend had this problem, but after awhile on the gluten-free diet, she was able to return to dairy without a problem. I don't totally understand it, but sometimes that dairy sensitivity and Celiac go together. 

The dairy thing is because digestive enzymes that break down disaccharides in the gut can be lacking when the gut is damaged. The doctor actually did have a sample of his intestine checked for the and weirdly lactose as the only thing he CAN digest properly! All the other enzymes were low but lactase was fine.Which I guess is kind of backwards, but whatever, lol. At least he can have yogurt!

He's doing okay...today we were at a community event and he spotted the donut truck and got excited until I told him we couldn't have them. That sucked, but we did get fresh squeezed lemonade at a cart that only sold that. Still not eating great. Today he was overtired and we were leaving for the event and I ran back in the house and got him a dose of ibuprofen - it helps PANDAS and he was cleared by the GI doctor to have it as needed, and either that or the Luna Bar I gave him to eat in the car because he didn't eat any of his lunch did seem to help.

 

 

[Crimson Wife]

2 hours ago, cintinative said:

hey @Ktgrok wondering how your boy is doing.  I am really hoping Jean is right and that the reflux will also improve as he heals--it makes sense.

Also someone mentioned this, but often times Celiacs struggle with dairy initially because of all the damage. My friend had this problem, but after awhile on the gluten-free diet, she was able to return to dairy without a problem. I don't totally understand it, but sometimes that dairy sensitivity and Celiac go together. 

Our integrative neurodevelopmental pediatrician (who is a professor at UC San Francisco Medical School) told me that the chemical structure for casein (dairy protein) is very similar to that of gluten and that people who have problems with one generally cross-react to the other. Also soy protein (but soy lecithin is okay according to the doctor).

I would eliminate dairy and soy protein for a child with celiac or gluten intolerance.

[ktgrok]

12 minutes ago, Crimson Wife said:

Our integrative neurodevelopmental pediatrician (who is a professor at UC San Francisco Medical School) told me that the chemical structure for casein (dairy protein) is very similar to that of gluten and that people who have problems with one generally cross-react to the other. Also soy protein (but soy lecithin is okay according to the doctor).

I would eliminate dairy and soy protein for a child with celiac or gluten intolerance.

He would not get any protein at all then. Right now, due to his massive (and recent/sudden) food restrictions he eats very few foods. We think it is probably linked to the PANDAS but may be the celiac, we are not sure. Also, not sure if gluten intolerance would be the same mechanism as celiac? I know celiac patients can often tolerate foods that gluten intolerant can't, but will look it up. I know casein in general can be hard to digest. 

[Crimson Wife]

57 minutes ago, Ktgrok said:

He would not get any protein at all then. Right now, due to his massive (and recent/sudden) food restrictions he eats very few foods. We think it is probably linked to the PANDAS but may be the celiac, we are not sure. Also, not sure if gluten intolerance would be the same mechanism as celiac? I know celiac patients can often tolerate foods that gluten intolerant can't, but will look it up. I know casein in general can be hard to digest. 

"Leaky gut" can cause gluteomorphins and caseomorphins to reach the brain and cause picky eating because the individual becomes addicted to them.https://drjosephalaimo.wordpress.com/2011/06/23/caseomorphins-and-gluteomorphins-–-the-food-opiods/

My gluten intolerant child ate only a handful of foods (all gluten and/or dairy-heavy) until we eliminated gluten and dairy from her diet. Now she's actually my BEST eater.

[ktgrok]

11 minutes ago, Crimson Wife said:

"Leaky gut" can cause gluteomorphins and caseomorphins to reach the brain and cause picky eating because the individual becomes addicted to them.https://drjosephalaimo.wordpress.com/2011/06/23/caseomorphins-and-gluteomorphins-–-the-food-opiods/

My gluten intolerant child ate only a handful of foods (all gluten and/or dairy-heavy) until we eliminated gluten and dairy from her diet. Now she's actually my BEST eater.

He's definitely not addicted - he won't eat cheese for instance, and only eats the yogurt if I put it in front of him and make him eat, which I do when he hasn't had enough protein. This was a drastic, sudden onset restriction of eating, limited mostly to foods that are cold in temperature. 3 months ago he ate normally. 

[ondreeuh]

Go-gurts freeze really well. 

Is there a GF meal replacement drink like Boost or Ensure? I see that Carnation Breakfast Essentials “May contain wheat”.

[Kanin]

A friend of mine had major reflux issues in his mid-twenties. After he eliminated both gluten and dairy for a long while (6 months/a year, I think) he could eat both again with no reflux. Obviously, your little guy won't be able to have gluten, but perhaps after a time of gluten free and/or dairy free, his gut will heal and the reflux will go away.

It kinda sounds like you need to get the potential PANDAS under control, to get him eating more, and then you could think about eliminating dairy as a trial.

There are quite a few good dairy-free ice creams. The cashew milk kind is really good, and I just see it in the regular grocery store aisle. Coconut milk/ almond milk ones are good too, but the cashew one is soooo creamy. I have also seen cashew milk yogurt! Not tried though 🙂 

[Granny_Weatherwax]

From a mom of a TS/OCD Gluten intolerant son to you - it is difficult at first. You will be inundated with restrictions, advice, and possible medication combinations. You will want to cry, scream, and throw a fit. You will worry. You will fret. You will spend hours looking at labels, cleaning, and prepping. You will question your abilities to read labels, clean, and prep. You will doubt the ability of others to read labels, clean, and prep. Some days will seem long, others too short. There will come a day, however, when you will be getting ready for bed and realize that "Wow, today was a great day."  and "We rocked it." Those days will become more frequent.

Yes, the initial weeks after going GF will be especially troublesome. As PPs have stated, there will be mood swings and physical and psychological changes. Toileting habits may differ for everyone. You will learn to recognize the initial, short term, and long term symptoms of having been glutened. You will have a glutened timeline. I can tell 15-20 mins after I have ingested gluten. My first symptom is emotional; I get weepy. DS's first symptom is agitation. Shortly after that the physical symptoms begin. These can last anywhere from an hour to days, depending on the type of glutening. I get joint pain and lethargy that can last between 3-7 days. DS gets the digestive symptoms that can leave him dehydrated and lethargic for 3-5 days.

The good thing is you are going to be on top of it and, as your DS ages and understands more, you can teach him to advocate for himself. It does get easier. Not easy but easier. He'll have to learn to say no to the mom who brings cupcakes or cookies to an outing and says "Just a bite or two won't hurt." or "These rice krispy treats are gluten free. I made them myself."  This will be another difficult adjustment.

Some things we learned to avoid: Gatorade and other sports drinks. These were TS/OCD triggers for DS.

We got rid of all plasticware and our microwave and reheat everything on the stove in separate dishes. This eliminated a source of cross-contamination and soothed my mind about chemical contamination from cheap plastic.

We became really proficient at creating and packing GF lunches and snacks for scout trips and tennis matches. 

---

For us, dealing with the Gluten Free lifestyle was easy when compared to living with TS/OCD. 

 

[Jean in Newcastle]

49 minutes ago, The Accidental Coach said:

 

Some things we learned to avoid: Gatorade and other sports drinks. These were TS/OCD triggers for DS.

 

 

Why?  Isn’t Gatorade gluten free?  

[Granny_Weatherwax]

21 hours ago, Jean in Newcastle said:

Why?  Isn’t Gatorade gluten free?  

Yes, they are GF. I didn't mean to imply they weren't. I said they triggered the TS/OCD. DS would drink a sport drink and begin ticcing and stuttering within minutes. We're not certain what ingredient was the cause but we chose not to include them in his diet. Since the OP was discussing PANDAS, I thought the sports drink- ticcing connection was relevant.

[Jean in Newcastle]

1 hour ago, The Accidental Coach said:

Yes, they are GF. I didn't mean to imply they weren't. I said they triggered the TS/OCD. DS would drink a sport drink and begin ticcing and stuttering within minutes. We're not certain what ingredient was the cause but we chose not to include them in his diet. Since the OP was discussing PANDAS, I thought the sports drink- ticcing connection was relevant.

Thanks. That makes sense. I just panicked because dd drinks Gatorade!

[Katy]

@Ktgrok

A couple food ideas:

• Udi's makes a gluten free pizza crust that is pretty good.  If you get some plain Fage greek yogurt (it's just strained yogurt, no dangerous additives), you can make it taste like a delicious alfredo sauce by mixing in a bit of savory stuff like parmesan or romano cheese, for adults I also add stuff like garlic, parsley, basil, and oregano, but idk how well that might go over with kids. The Jimmy Dean precooked turkey sausage (patties at Sam's Club, links at Costco) are gluten free and quick to microwave. You could also add any other toppings and/or cheese he might like for extra calories.
• Until everyone is OFF gluten squeeze containers of condiments are your friend. It's too easy to contaminate everything with crumbs otherwise.
• The easiest cookie recipe is 1 cup nut butter (new, unopened jar), 1 cup sugar, and 1 egg.   Then mix in anything you want that is also gluten free (nuts, mini m&m's, dark chocolate chips). Bake at 350 for about 8 minutes.