Not sure what to do next with my DD’s ongoing health woes

[ihatethecold]

She’s 18 and had 4 viruses since December.
very severe tonsillitis at Christmas needing antibiotics
covid in feb.
campylobacter in March that was very debilitating.
now covid again.

she has since developed IBS and is having to use loperamide often so she can go to work.

shes had blood tests and nothing has come back as concerning
(Vit D, Vit B, Iron levels, inflammation markers)

she saw a gastroenterologist who wanted to run tests and has put her tummy issues down to anxiety and post viral.

my daughter is exhausted. She describes life as if she is walking round holding a gym dumbbell.

I really want to help her get back to health but I don’t know what supplements/ food / specialists to look at?

she avoids all caffeine and any spicy food. This goes straight through her.

id like to get sauerkraut/kimchi but I’m worried about buying a beneficial one that’s good for gut health. I don’t really trust the packaging or claims really.

I want to support her getting her gut health in a better place.
the gastroenterologist said probiotics don’t make a difference due to the stomach acid killing any bacteria.

we have private health insurance so I’m going to ask for her to see a dietitian but I’d really like some advice if any of you have been through this.
thanks.

I'd suggest asking for an IgE blood test. This will show a true allergy. My DD went through similar & in part her "IBS" turned out to be an allergy to soy causing colitis.

Check her against "The Beighton Score" to see if she is hypermobile, Ehlers Danlos affects guts too & my DD also turned out to have this. She'll need to see an EDS aware rheumatologist if she shows positive against the Beighton score

I'd suggest a private "active B12 test. NHS use a serum B12 test that is far less accurate with up to 50% false negative results. My daughter also turned out to have pernicious anaemia, despite her NHS tests saying she didn't. The loading dose of B12 injections with co factor vitamins cured her soy allergy & generally makes her a lot less sensitive all round & big improvement on her immunity

I'd also suggest a DNA test & check it on somewhere like genetic genie to see her Methylisation results. DD & me turned out to have genetic mutations affecting the metabolism of several vitamins. We need our D to be very top end or slightly above of the scale to be symptom free & for it to work. B12 mutations showed up, which helped get her PA diagnosis & we can't easily convert folic acid to folate, so need to take folate with our B12, not the prescription Folic avid, which doesn't work for us

Hope that helps & you find answers soon, I know too well it can be soul destroying fighting for answers & getting nowhere.

I can recommend Curcumin/turmeric supplements, or "golden milk" this helped my DD a lot until we got to the bottom of it all

Good luck

OP, my dd developed IBS after campylobacter and our GP prescribed Rifaxamin. I could not believe the difference it made as she had suffered with IBS for a very long time and it was restricting her life and she was miserable.

I hope your dd’s overall health improves.

Thank you for the responses. Im going to ask about Rifixamin? Her Gp was so dismissive of her severe diarrhoea and blamed it on anxiety. I had to take her to a private Gp so they would test her stools. Came back as campylobacter.

she cant cope with having blood tests done, i'm not sure i'll be able to convince her to have more blood taken!

@bevelino how long ago did she have campylobactor and the associated IBS before getting the medication? Did the Dr suggest the meds or did you research and find out about it?

She was given Erythromycin but the side effects were so awful she couldn't take more than 2 tablets. projectile vomiting and stomach pain.

They’ve definitely ruled out coeliac?

Yes. Tested for coeliac.

@ihatethecold My dd had campylobacter just as she was about to start year 7 and had associated IBS right up until she was 17 and about to start university. The IBS became very debilitating and dd complained of feeling bloated and uncomfortable the whole time.

I took her to see a gastroenterologist privately and she was prescribed Rifaxamin, which our NHS GP then approved and we did not have to pay. Rifaxamin transformed dds life; and I will be forever thankful to our GP for agreeing to prescribe it under the NHS as it an expensive drug.

oh wow, what a long time to have it. Did they test to find out she needed this drug or was it based on symptoms that were ongoing from being 11 years old.
did they know she still had campylobacter in her gut?

Dd was hospitalised with food poisoning at aged 11 and they tested her and the result was campylobacter. She eventually got over the campylobacter infection but it left her with mild IBS, which progressively got worse as she got older. The Rifaxamin blitzed the bacteria from her gut and she was a changed young woman after around two weeks of taking the medication.

Sorry to hear about your dd. I always recommend kefir for IBS x

None IGE are allegeries but can only be tested by removal of the allergen and then challenge by eating it.

Have you considered temporary lactose intolerance?

I’ve heard that probiotics are killed by stomach acid but prebiotics (which feed the bacteria already in your gut) are not - you could try inulin (food supplement, totally unrelated to insulin!).

Hi OP. I had campylobacter when I was a year older than her. I am otherwise healthy but it affected my stomach for 18 months! Any time I ate anything spicy or rich it would give me awful cramps, diarrhea etc. Basically the lining of her stomach has been battered by this nasty food poisoning. Don’t worry about it - in time it should heal itself. I am early 30s now and I am fine, but it took a while. And it will have weakened her system, hence the other illnesses. It’s a horrid, horrid thing to have but she will be ok.

The problem she is having is its affecting her ability to live a normal life Mariposista, She is exhausted and its affecting her ability to work many hours, she also wants to do a foundation year at her 6th form but the thought of the long days is putting her off. She doesn't have any stamina. She walks round constantly yawning and never feels refreshed after sleeping.

Ive contacted the health insurance company and they've said to email her gastro consultant. ive mentioned the medication and asked for a dietician referral.

Id like to get her kefir etc but how do I know which brand is good and not full of sugar?

That is exactly how my dd was and she couldn’t carry on like it as it was also affecting her mental health. Our GP was keen to ensure dd could attend university and have a normal student experience.

If I were you I would see a nutritional therapist as they will put together a comprehensive plan on how to get her life back on track. This will include diet, supplements and lifestyle. Conventional doctors will continue to fob you off, they are not trained in this kind of thing. Two that I would recommend are Rebecca Ellison (hello healing) and Alina Tierney. They will be able to help you.

My concern would be a nutritional therapist isn’t a protected title and any one could set themselves up as one.
a dietitian is registered and has studied at degree level.

Agreed but please trust me on these two. I have worked with both of them over the years and have some very complex issues myself and they have both helped tremendously. I was bed bound for a number of years and now expecting a baby boy in October. They both have websites and would be happy to answer any questions re qualifications I’m sure. Rebecca does a free chat before committing I believe!

So to update. The consultant has referred my DD to a dietitian and wants to see her next week to discuss rifaximin with her.

I feel a sense of relief that she can get better with some help.