Daughter tested positive for Hydrogen breath test. NEED advice

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Hi, my 16 year old had an endoscopy and colonoscopy which revealed gastroparesis as abnormal amounts of food and fluid were found in her stomach having starved for 36 hours.  Today she blew 87 on her Hydrogen Breath test with a starting baseline of 7.

Does small intestinal bacterial overgrowth cause gastroparesis or is it the other way around?  Am confused as to whether this is now deemed the cause of the delayed gastric empyting? Been given two lots of very strong antibiotics but i am unsure of what the long term prognosis is. Is it a simple pop the antibiotics and she is better?  or will the symptoms and problems continue?

We don't get to see the consultant for 6 weeks to discuss so feel fairly in the dark.

Thanks x

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  • Posted

    Taking those medications suggest a bacterial infection. No good worrying, the best thing to do is take what she's been given and see what happens. Girls that age can have a lot going on, talk to her and try and tease her day to day goings on out of her to see if it might be related to her age group. Don't push her, nice and easy and like I say, stop worrying because she'll sense it.

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  • Posted

    Which hydrogen test?

    Which substrate was she given please?

    (glucose, fructose, lactose, mannose, sorbitol or for helicobacter pylori - urea breath test...)

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    • Posted

      I believe it was lactose. She keeps getting strange drops in blood sugars that make her feel really tired and shaky she's lost 2 stone in weight despite eating lots and has episodes of sickness

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    • Posted

      Thank you!

      We had all kinds of hydrogen/methane breath tests as docs were sure to be 'some kind' of malabsorption, too (when those sugars do not get digested, not absorbed, but stay in guts for bad bacteria to feed = making bloating, gas, pain), lactulose as base test a must, then lactose, fructose, glucose (for immense price, 100s of USD).

      And nothing showed up.

      If you have a positive food malabsorption via breath test,

      eliminating any of those containing foods is first step. (you always need two breath tests, lactulose giving base to measure other sugars against) 

      Hence you need to absolutely know, which tests were done and what was positive.

      (to eliminate that culprit, to know which other culprits could still be the case, but not tested yet)

      Or was it the lactulose breath test?

      (which always has to be done prior any sugar testing. So if lactose was tested, you needed two different breath tests) If lactulose breath test was positive, 

      it can be SBIO (and other tests useless to interpret or taken as baseline to minus from) and has nothing to do with lactose.

      ? so I am a bit confused here with what was positive as it is a difference.

      Yet I hope doc gave you good instructions,

      if it was 'only' lactose is relatively easy though.

      There are also lactase enzyme powders

      to be bought to eat the missing enzyme with it.

      There is one very good product containing a very good mix of heaps of enzymes

      and you can trial and see, if her symptoms were mainly indigestion due to lack of enzymes only.

      My girl had quite some antibiotics and no SBIO (glucose, lactulose tested)

      I wonder how she can eat a lot with gastroparesis? It usually doesn't go well together.

      My girl has gastroparesis, eating itself a huge issue and leads to vomiting, each time, but amount is different depending on amount eaten, consistancy and what was eaten (meat the worst).

      So keeping meals small, liquid and frequent is quite one of the first things with gastroparesis.

      We did so well and could escape tube feds that way.

      She can survive bad flares with fruit sorbets, milk (as she has no lactose malabsorption), apple puree (no fructose malabsorption), potato mash, it is a lot of trial and error.

      We have VitB, zinc patches for skin as absorption via stomach/guts often does not work.

      We have very certain probiotics, yet I don't know to which extend they help as no improvement in symptoms.

       Exclusions are peace of mind and nothing is worse, than being talked down by so many health professionals to just live happy and stress free and all just 'teenager' problems, just move more, do more exercise.

      Being teenager does not make you invincible to any real physical issue.

      Gastroparesis is not just idiopathic. There is always a reason, it just can't always be found.

      (My girl has slow colon as well, so it really is terrible. She also is hyper mobile, her collagen is really bad and all skin outside broken, of course the same is happening inside with guts and blood vessels leading to malfunction and pain. Yet, I need to find out if one or two issues have to be surgically fixed, hardware problems like squeezed blood vessels or squeezed duodenum will never heal itself and are very likely in people with hEDS. We are soon assessed (finally after 2 years of fighting) for SMAS, MALS, nutcracker. 

      Software problems like virus infections, can heal, if given right foods apparently, to strengthen immune system. I stay very clear from immune suppressants.)

      All all the best

      and it can be a long road.

      After years being carer for my very sick child,

      one thing I learnt is,

      that you need to keep a copy of every and each result

      and get hold of each and every doc letter from specialists as a copy sent to you, too.

      Sometimes they type up quite significant observation or history errors,

      you need to correct them as they stay in the system this way!

      You need to know what was done and what not.

      You need to know how 'dead end' that result was or if there was room for error (as so many radiology results are).

      Sometimes you have to change doc and get a second and third opinion.

      Don't be afraid to do so. Even some talk you down for 'doc hopping'. they are not small children anymore who are said to be damaged by being dragged to docs. In contrary, not being taken seriously does damage.

      My girl hated to be talked down instantly like 'oh, all just stress at school' or 'oh, you try to avoid school by being sick' or 'oh, do your parents have stress that effects you'.

      Nonsense. I am sick and tired of luhdiduh quick psychological blackmail. My child has no anorexia nervosa, proven with gastric emptying, colonic transit and now finally going to see, if physical structures like blood supply or squeezes of duodenum made problems (as liver, kidney, pancreas parameters are repeatedly fine).

      You need to have a lot of strength to push on. 

      Sometimes those things are really over in half a year due to being a virus infection, that body fights successfully,

      but sometimes it is plain a physical issue or constant metabolic issue. Psychological issues...come last resort for explanation please. I know at least 10 people due to other social  media, who were talked down sometimes for 14 years only to find out finally, going half around the globe, what was wrong physically and could be fixed (massive surgically, no fun, but worth it)! Not everything is just in the head. Can be well too, but not as first line diagnosis. Hang in there! Good luck!

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    • Posted

      PS:

      I have looked at different diets from all angles and sometimes main stream is not really making sense.

      If she has strange drops in blood sugars, the liver seems not fully stored with glucose.?

      Can she have small amounts of fruit (if not fructose intolerant) every two hours?

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