Gut and Psychology Syndrome (GAPS) Support thread

[Jenn+Ethan+Emily]

Thanks Rebecca

Emily is still on 1/4 tsp of the infant probiotic once a day. I am thinking about upping it

One of my main concerns wth Emily is the fact she only has a bowel movement about once every 10 days. It's never constipated but just uncomfy. She is SO much happier for the first few days after the BM and then gets uncomfy again. Any special thoughts on helping her with that?

[bjutka1]

This time it's me needing some support and extra TLC.

Our biomed dr rang to say that the result for Julia's digestive stool analysis came back. He said it's the worst he has ever seen! She has 5 types of abnormal bacteria and 2 types of fungi living in her gut. There are some benefitial bacteria missing altogether, there are some others that are there but not many of them. There is also some inflammatory markers. He is sending me the test so I will get to see it tomorrow or on Thursday.

He said to keep going with the probiotics with very small amounts and also mentioned a herb starting with U but couldn't make out the rest. We are to see him next week when we will discuss how to go forward.

In the meantime, Julia is getting worse and worse. Her poops are now mucusy and she is very constipated or has diarrhoea. She is rolling in pain from time to time and it's very hard to see her in so much pain and not to cry. I'm absolutely devastated by what he said. I mean,he treats autistic kids - and their gut is in better shape than my Julia's.

We were so much better last week but these last few days since we started the probiotics and now this news - it's an absolute nightmare!

[Jenn+Ethan+Emily]

((((((((((((hugs))))))))))) Hun! I can imagine that would be so devastating to hear I wish I had some good advice for you. She is very lucky to have you as you are so dedicated to helping her be healthy.

[bjutka1]

Thank you, Jenn. I can't stop crying at the mo...

As for constipation, I'm definitely gonna look into enemas. Sometimes the stimulation of the anus is enough to get them started with the poo. In Hungary (that's where I'm orinially from) we use a so called rectal tube for babies, it's a very thin rubber tube that you insert gently into baby's bottom, this will help them pass the wind and stool. Don't know if it's available in your part of the world. Another idea is suppositories - we have to regularly use them, unfortunately. Apparently, it's not habit forming on the long run, and it's better for them to get their bowel emptied regularly. HTH

[deb]

Goodness, that must have been hard to hear. But as scary as it may be, imagine if she didn't have you to advocate for her and have her tested. Now that you have information, you KNOW that you can help her! 

[tigerlilly905]

I don't see why not Kim. Those sound yummy!!

I was also thinking... I've made breastmilk "popcicles" for when the boys are teething.. I might make some bone broth popcicles. That could be an ok way to get soup stock in them.  Arthur particularily loves anything cold in his mouth right now so I think I'll do that next batch of stock I make.

Posted as others were posting... Jutka... That is absolutely heartbreaking Big (((hugs))) and healthy vibes to dear Julia. How terrible.  It does sound like you are in good hands and you are doing amazing treating her.  I agree with Jenn, Julia is very fortunate to have a mother as dedicated as you Can you give her some gentle tummy massages with FCLO (but any oil could do)?  Just rubbing in an "S" shape can help ease discomfort a little.  

Jenn, that would concern me too  I have heard of the enemas but don't have any experience with them. Those could maybe help? I would also consider upping her probiotic if she's doing well on the 1/4 tsp dose. We do 1/4 tsp AM and 1/4 tsp during the DF... perhaps try the 1/4 tsp AM and then 1/8 tsp PM for a bit then increase from there? I know the probiotics help Arthur poop BIG TIME. He was constipated before we started them as well, although the longest he went without a poop was 5 days... The probiotics have made him regular. Now he poops 4-5x/day.  We used to be lucky if we only got 1/day or 1 every other day.

[bug_blues70]

Jutka - huge hugs!! As Deb said, now you know, and think how early you caught it all!! My doctor (who also treats autistic children) said that he normally doesn't see patients until they are in late childhood and he was happy we caught Milo's problems so early b/c if you catch these things before age 3 there is a MUCH better prognosis. It isn't common for parents to be so attentive and to do so much as you have for Julia so early - there is a LOT you can do to help her before even bigger problems set in. You are doing amazing!!!

[Mom to M&M]

Have to dash but wanted to send along huge hugs too Jutka!

[bjutka1]

Thanks, girls. It's really good to have you and get some support. I'm very down at the mo.

Megan, by MUCH better prognosis what does he mean? Does she have a chance of healing completely? I'm worried she will have to stay on a special diet for the rest of her life, or worse, she will get worse symptoms like one of the GAPS conditions... Just really freaking out at the mo.

A guy from Klair Labs came back to me regarding the probiotics. This was his reply:

"We have not had reports of allergic reactions to our probiotics. We have been marketed probiotics for over 30 years and I do not know of a single reported allergic reaction.  Uncommonly, people do report loose stools following the initiation of probiotics. People can also experience gas. I am surprised this would happen after a dose of 1/8 teaspoon (5 billion CFU). However, some people are sensitive to small numbers of probiotic organisms. I suggest trying ½ capsule of the Ther-Biotic Factor 4 to see if your daughter tolerates Bifidobacterium species alone. If she does, I would continue that formula for 1 months and then try and transition to the Infant Formula."

After I read the email, I phoned him and he said that the mucus in her stool would really worry him as mucus is always an inflammatory marker, not just a die off. In the end, he actually suggested trying her with lactobacillus acidophulus which does not have any inulin in it and also just one type of bacteria. He thinks it would be better easing her in with single species rather than a whole load at once since she is SO sensitive.

But in the end I decided to just go back to biogaia. I know she tolerates that and it will also arrive in a couple of days rather than waiting for shipment from USA. That one is a LACTOBACILLUS REUTERI PROTECTIS (L.REUTERI)  probiotic.

The only thing is, how am I to get her better and to reestablish good bacteria in her gut when she can't have the stronger, theraputic probiotics? How is she ever going to get better?  

[Mom to M&M]

Have you tried her on Culturelle? They have a dairy and soy free version - we used the adult version thereof and open a capsule daily to add to DS' smoothies. DS has done GREAT with it and was able to eventually transition from that twice daily to now that once daily plus a high dose of other probiotic strains once daily as well.

[tigerlilly905]

I could be wrong, but doesn't culturelle have either FOS or maltodextrin in it? I can't remember but I think it's one of the 2..  Both are out on gaps I'm pretty sure

Jutka, if you go back with the Biogaia, you would probably need to give her quite a few drops to get to a more therapeutic dose. I think 5 drops is only 100 thousand CFUs, right?  It could be that you never had die off from it b/c it's such a low dose.  Maybe going back to them would be ok for a bit, but I'm pretty sure you'll have to increase the dose quite high for healing.   If she then tolerates high doses of the one strain in the Biogaia, perhaps you could start to add another small dose of a different strain (like the acidophillus) down the road?  Sounds like Klaire Labs was helpful though, thats a bonus.

[tigerlilly905]

Ah, just googled, it's Mannitol in the Culturelle for kids.. pretty sure that's out. I remembered looking into it a while back.

[Mom to M&M]

We don't use the Culturelle for kids. My holistic practitioner highly recommends using the regular/adult vegetarian capsules. Dairy and gluten free. Has 10 billion cells of Lactobacillus GG and 200 mg of Inulin. Other ingredients are hypromellose, vegetable magnesium stearate, silica and titanium dioxide. She also highly recommended the Klaire Labs Vital Immune one once DS's system was ready for it.

[tigerlilly905]

Gotcha, thanks Karen The adult ones do sound great! I hadn't read anything about those. I'm still waiting on my Vital Immune to arrive... they've crossed the border so they should arrive any day now

[bug_blues70]

by MUCH better prognosis what does he mean?

I'm sorry, I wish that I could tell you exactly what he meant by that, but I just don't know. I didn't ask :-/ I do think that there are some people who have really bad gut conditions but don't present with any of the gaps conditions. I'll never believe that every "normal" person has perfect gut conditions - I think it depends on a lot more factors than just plain gut (genetics is an example) - she even says so in the book. So take it one day at a time and don't convince yourself that she is definitely going to have a condition like autism.

She will get better and better b/c as she gets older she will be able to tolerate more and more and as she heals b/c of the baby steps you are taking, that will help her tolerance too. You can add probiotic strains one at a time if you have to. Also, your doctor will have ideas on how to help the inflammation and mucousy poos when you meet with him. As Rebecca says, you have to go slowly with these things and take tiny baby steps sometimes. Sometimes it is one step forward and two steps back and that's ok b/c you are doing the best you can.

I don't know if this will help for you (I can't remember exactly where you are with the diet and can't go back to look just now) but Milo has had mucousy poos his whole life until I started the diet and stopped giving him starchy foods like rice and potatoes. I also think that dairy causes mucous for him too. I think you said that she is on FF? Could you try the liver based home-made FF from the link that Rebecca posted (which is on the first page of this thread)? It might make a huge difference.

Big hugs! Just remember - you are doing an amazing job and knowing what you know, you can do (and are doing!) SO much for her. So many people would just say "oh she'll grow out of it" and do nothing.