On the support forum I run and another I co run I am constantly writing the same replies to the same questions. Time and again the same questions come up - a child/baby with reflux who the doctors say they will "always" outgrow by 6 months fails to do so. Then 12 months comes, but weaning is problematic and the child appears to be reacting adversely to Cows Milk, Wheat and other foods. Tests are negative and parents are fobbed off and made to feel they are blowing symptoms out of proportion.
Many doctors perform allergy tests, for gut allergies which cannot be tested for, and then promptly dismiss the case because there is nothing for them to do. They may perform a pH study, previously the "Gold Standard" reflux test which cannot detect alkaline/allergic reflux or pressure changes in the bowel and possible allergic bowel inflammation is never picked up. Few hospitals can offer an impedance study, fewer still know how to interpret the results adequately. So because they don't have a clear answer many doctors are dismissive.
You would be horrified how often this happens, I hear about it all the time.
Some carry out endoscopies but stop above the stomach and the results are clear - so there must be "nothing really wrong". All too often the spotlight is then turned on the mother who "must" be neurotic, over-reporting symptoms, depressed perhaps? But lack of understanding or explanation is NEVER an excuse for being dismissive and accusatory. Ignorance does not excuse such actions - or have we not come so far from the Witch hunts of the seventeenth century? I have no explanation does not equal "someone is to blame". Even the most sympathetic doctors run out of ideas when tests come back clear.
I'm not sure what alarms me most - that there is still so little understanding amongst health professionals about gut allergies and their impact on the full length of the GI tract and elsewhere, or the stark truth that gut allergies in infants and children are occurring in epidemic proportions.
For us, we struggled for years with all of the above until we were referred to GOSH who FINALLY performed scopes below the stomach. Bingo. Serious bowel inflammation, duodenal ulcers and other damage. Everything above the stomach had looked near perfect, ph studies had been reasonably acceptable... and skin prick tests negative for the most part. Dealing with an emergent disease like EGID, or symptoms which doctors have yet to put together and diagnose is a massively uphill slog, and unless you have the strength of Goliath, the stubbornness of Thatcher and the unwavering focus of Churchill you don't stand a chance.
But aside from all this the bigger question is being neglected - WHY are SO many children suffering severe gut allergies? Why does our youngest generation suffer food protein allergies on epidemic proportions? Because seriously, that's what we are looking at here. At the twins' school, six children have diagnoses of EGID now. SIX. And of those I have helped support on forums over the years, friends I have made, I know about 50 children with gut allergies impacting seriously on their lives. Our Consultant at GOSH asked my daughter and I to appear on TV for the 100th Anniversary of GOSH to spotlight the Gastro department and highlight the escalating number of children suffering from gut allergies. He used the word epidemic then, and it was no exaggeration.
But it seems no one is doing the Maths, taking the data and analysing it. No one is sending out the information and any new results to local hospitals, explaining how gut allergies work, sharing new knowledge. Our NHS is functioning in crisis mode and only dealing with the here and no, the in-my-face-and-un-ignorable crisis/case I have to address. But at some point, SOMEONE or some group is going to HAVE to address this massive issue and start looking at why our children cannot eat. At why their digestive systems are no longer happy in the twenty first century first-world environment we are bringing them up in.
Until then, I will continue to post the same answers, day after day, and share the information I have learned over the years, the information GOSH share through their APG Study Days for Parents and Professionals because until *everyone* understands what a gut allergy IS (and it is NOT an intolerance!!) there is no hope of a consistent, helpful approach for parents in the nightmare that is feeding and caring for a child whose gut cannot perform the basic functions it was intended to AS it was intended to. And I, for one, cannot live without hope. My children and all the other children I know suffering with gut allergies and related diseases deserve better. FAR better.
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