Letter to a Quack and a Contaminated Home

Well, my dad wrote two letters about my situation: one to the head gastroenterologist at the hospital, and one to his GP. He sent them off nearly 2 weeks ago, and as expected, we have yet to hear anything. It isn't surprising, and it's probably true that his letters were unusual. The doctors probably don't know what to make of them. He had me read them over to check for any missed information that I want included, but honestly, I have no idea what's best to write in a letter like this. So they were short, 3 or 4 paragraphs. I felt they were very vague but gave them the OK because I worry these doctors will be more confused and annoyed than anything. (I always feel like a burden - a feeling I wish I could shed because I'll never be able to fight if I fear I'm a nuisance child.) It will be 2 weeks on Monday, so the question is, where do we go from here? Wait another week? 2 more weeks? A month? ...Forever? At this rate, I'll end up making an appointment and trying to explain 7 years/15 years of personal history to a man who's short on time, ignorant about who I am, and 'humourless.' A messy appointment I hoped to avoid, hence the letter from my father, his patient of many years, someone whose case of M.E he knows.

Meanwhile, I have been gluten free for approximately 6 months, give or take, and see absolutely no improvement in my symptoms. It dawned on me that cross-contamination in the home is still an issue. I am the only one on a gluten free diet. Which means the others eat sandwiches, biscuits, crisps. I realised that my dad eats a sandwich and then goes around the house touching things with those wheat hands. My mum eats Custard Creams every day and likewise then goes touching things. Everything I've ever read about celiac disease and cross-contamination tells me that they need to wash their hands thoroughly after eating these things. I have raised this issue but my faith in their ability to remember and also, if I'm honest, take it seriously, is nil. Contamination is tough in any celiac or gluten-intolerant household. It's hard to remember all the 467 ways something can be contaminated. A lot of these ways seem like OCD paranoia and that makes it hard for people to take them seriously. In my case, there's no positive result for celiac. Even my father got negged in his biopsy after his positive blood test. So I have taken the challenge of being gluten free entirely on my own as a theory; no medical advice or assistance, nothing to back up its necessity. It's an experiment at the end of the day. And an experiment perhaps does not warrant washing hands after a biscuit because the naughty biscuit crumbs might get on the banisters and my possessions.

I feel at a standstill. I have taken the steps I can see before me, but the rest relies on other people. Making sure the home is clean from gluten. Hearing from doctors. I'm not sure what the next step for me to take is. Truthfully, I've turned away from the theory of celiac in recent months, thinking my continued symptoms and the new/progressed symptoms that keep popping up mean gluten is not a problem within my body. I have considered M.E or lord knows what illness instead. But, I can't turn away from the possibility while I see contamination. I just want to figure everything out. Trying to figure things out is very lonely. Especially when your family aren't fully on board. And your SOS message in a bottle goes unanswered.
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I'm still mostly gluten free after about a year without but all it really did was make me lose a lot of weight. When I eat it my eyes dry out more but my IBS doesn't get worse. I have horrible dry eyes so still limit it but not completely.

Somethings that the gastroenterology even recommended like "more fiber" actually makes my IBS flare the worst. (Anything scratchy like bran or seeds gives me horrible problems almost right away. Flax, chia, raspberries or blackberries are the worst.)

You could test the gluten like I did after a time and see if it makes anything worse. Start very slowly though. And then also look for other things that may be causing issues. Cow's milk dairy also gives me stomach cramps.

Your dad sounds wonderful. It's nice to have a family members support. Some people don't have that.

It might be that the doctor is just very busy. That's the impression I get from doctors here in the states. Within the last 2-3 years there have been hoards of them retiring because of governmental regulatory changes so we now have a bit of a shortage going on, I think.
 
I'm still mostly gluten free after about a year without but all it really did was make me lose a lot of weight. When I eat it my eyes dry out more but my IBS doesn't get worse. I have horrible dry eyes so still limit it but not completely.

Somethings that the gastroenterology even recommended like "more fiber" actually makes my IBS flare the worst. (Anything scratchy like bran or seeds gives me horrible problems almost right away. Flax, chia, raspberries or blackberries are the worst.)

You could test the gluten like I did after a time and see if it makes anything worse. Start very slowly though. And then also look for other things that may be causing issues. Cow's milk dairy also gives me stomach cramps.

Your dad sounds wonderful. It's nice to have a family members support. Some people don't have that.

It might be that the doctor is just very busy. That's the impression I get from doctors here in the states. Within the last 2-3 years there have been hoards of them retiring because of governmental regulatory changes so we now have a bit of a shortage going on, I think.

Thank you for replying. It's interesting that it didn't affect anything except the dry eyes. Have you concluded a possible issue with gluten or do you think it's not enough evidence? It's odd that it would affect that and nothing else. I was already underweight before I went gluten free, and replacing my daily butter croissants, sugar waffles and bread with dinner didn't help, I lost a few pounds.

I was thinking of maybe trying to be gluten free over the spring and summer and then trialling some bread around October. I think it would be worth finding out for sure if my body gets worse at all. I'm also thinking of looking back and noting down any symptoms that disappeared or improved after going gluten free. Some that come to mind are the mouth ulcers I used to get, gas and gut pain, and night sweats.

I switched to lactose free butter a couple of months ago and I'm still watching the possibility of lactose / milk intolerance.

Thank you, well, with my history of agoraphobia he's already spent many years looking out for me well into my adulthood. But it's that agoraphobia among other mental health issues on my record that keeps me getting help...

I think you're right. I hope the doctors will contact us at some point. It probably has been filed under 'lesser priority'. I'm in the UK but the NHS is swamped. It just makes me feel very helpless.
 
I think I may have an undiagnosed autoimmune issue such as Sjogren's Syndrome that is affecting by my eating it. However, most of the time when I eat gluten now, it is in the form of sourdough bread.

The bread is the kind without added baker's yeast because I'm allergic to yeast but the fermenting could still be affecting me somewhat or it could possibly be the wheat itself but I think I've concluded that it is probably not the gluten.

I do better on sheep yogurt and goat milk products but still do have issues if I use goat's milk straight. Do you have those in your stores there?

Another side affect that I noticed when I went without the cow's dairy for a week or so and then reintroduced it was feeling very tense - not as anxiety but more as anger so if you can trial that at some point it might help too with the panic attacks.

But please don't feel pressured to try anything I suggest. You have to go at your own pace and try things as you feel comfortable to.

I truly dislike going on a blog or putting comments somewhere where the response is, "You should just try..." as though that could be the whole issue with the ME/CFS.

I've had this for 40 years now and I have tried just about everything and like all of us who have dealt with it this long, we learn that there are no easy-peasy answers to solve it.

If researchers are still so flummoxed then it is bigger than a simple solution of changing the diet. Eliminating foods has helped me get less headaches, sinus infections, and colds but it has done absolutely nothing to lessen the ME/CFS.

Hope something I've said is helpful.

Judee
 
Have you looked into the possibility of SIBO as being the culprit? Going gluten free means lower carb which is helpful for SIBO. It might not be the gluten that is bothering you as much as the carb load. Or Candida? That responds to lower carb as well. Maybe look in to trying some probiotics to see if that helps at all. Or digestive enzymes. Just throwing things out there.

I have Celiac so I totally understand about the contaminated house, however to be tested correctly for Celiac, you need to be consuming gluten prior to the testing. I don't remember the exact time but I think it might be two weeks.

I am surprised your father was cleared for Celiac after a positive blood test. There are a lot of Drs now who will go with the blood test instead of waiting for the damage to show up in the endoscopy. There is something called silent Celiac, where the intestines resist the corrosion but the body is damaged elsewhere in the attack.

Like Judee said, people with ME will eventually try EVERYTHING in their quest to recover. It may not cure ME if that is what you have, but if you DO have Celiac, or even Celiac AND ME, fixing what can be fixed will definitely help.

I'm sorry I have no real answers for you, but I wish you luck. Hang in there.
 
Have you looked into the possibility of SIBO as being the culprit? Going gluten free means lower carb which is helpful for SIBO. It might not be the gluten that is bothering you as much as the carb load. Or Candida? That responds to lower carb as well. Maybe look in to trying some probiotics to see if that helps at all. Or digestive enzymes. Just throwing things out there.

I have Celiac so I totally understand about the contaminated house, however to be tested correctly for Celiac, you need to be consuming gluten prior to the testing. I don't remember the exact time but I think it might be two weeks.

I am surprised your father was cleared for Celiac after a positive blood test. There are a lot of Drs now who will go with the blood test instead of waiting for the damage to show up in the endoscopy. There is something called silent Celiac, where the intestines resist the corrosion but the body is damaged elsewhere in the attack.

Like Judee said, people with ME will eventually try EVERYTHING in their quest to recover. It may not cure ME if that is what you have, but if you DO have Celiac, or even Celiac AND ME, fixing what can be fixed will definitely help.

I'm sorry I have no real answers for you, but I wish you luck. Hang in there.
Thanks for replying. I've read about SIBO over the years, but I've never really known what to think. Is it something that's more talked about in the alternative medical community and not really recognised by doctors? I used to read a lot about the low stomach acid theory in regards to reflux, but eventually concluded it was an alternative view and not something I could talk to a doctor about. So, if it's not one that my doctor would believe, I ignore it because I feel like I need a doctor on my side. If that makes sense.

I started eating a lot of bread in 2017 because I'd lost 12lbs and hoped it would help. I had my celiac biopsy in April 2018, and by then I was eating 3 butter croissants for breakfast, 2 sugar waffles for lunch, and bread and butter with dinner. Also biscuits (cookies) in between when I could. I don't know if that was enough gluten, but I hoped it was enough as I was loading on wheat as much as possible. However, my blood before was negative, so I was negged in both blood testing and biopsy, while eating a lot of wheat. My dad though... I don't know. I told him to load up before the biopsy, which I think he did (I was watching). The letter with his result said something about him being a potential celiac in future. I went gluten free in September and he has never gone gluten free. It's interesting about the carbs though, I have indeed been loading up on carbs. But, I weigh about 90lbs, or less.

Thank you, that's been my thinking for the last year at least; if it's M.E, not much can be done but I'd like to know, and if it's gluten, I must do anything in my power to take it upon myself and experiment, if no doctor will assist me. I want to find the right answer one day.

:)
 
I think I may have an undiagnosed autoimmune issue such as Sjogren's Syndrome that is affecting by my eating it. However, most of the time when I eat gluten now, it is in the form of sourdough bread.

The bread is the kind without added baker's yeast because I'm allergic to yeast but the fermenting could still be affecting me somewhat or it could possibly be the wheat itself but I think I've concluded that it is probably not the gluten.

I do better on sheep yogurt and goat milk products but still do have issues if I use goat's milk straight. Do you have those in your stores there?

Another side affect that I noticed when I went without the cow's dairy for a week or so and then reintroduced it was feeling very tense - not as anxiety but more as anger so if you can trial that at some point it might help too with the panic attacks.

But please don't feel pressured to try anything I suggest. You have to go at your own pace and try things as you feel comfortable to.

I truly dislike going on a blog or putting comments somewhere where the response is, "You should just try..." as though that could be the whole issue with the ME/CFS.

I've had this for 40 years now and I have tried just about everything and like all of us who have dealt with it this long, we learn that there are no easy-peasy answers to solve it.

If researchers are still so flummoxed then it is bigger than a simple solution of changing the diet. Eliminating foods has helped me get less headaches, sinus infections, and colds but it has done absolutely nothing to lessen the ME/CFS.

Hope something I've said is helpful.

Judee

This is all something to think about! I'm constantly looking at supermarkets and taking note of all kinds of foods, always experimenting and analysing (it's exhausting, isn't it?), so I will look into different kinds of milk products, and grains... I wonder if intolerance to grains is common with M.E? I've noticed I may be intolerant to oats, corn, and now I seem to be experimenting with gluten free wheat waffles... wheat without the gluten, I didn't even know there was such a thing!

I agree that changing the diet can probably only do so much with a disease like M.E... I'm still learning about it and still don't know a lot of the terms and research, but if M.E is neurological and/or autoimmune and affects every system in the body (basically the body being broken down and dysfunctional), then diet might help with symptoms, but the issue is much deeper and bigger. I reckon people with M.E have a lot of food intolerances. Avoiding those foods avoids certain symptoms, but the problem of M.E remains and will affect other areas, I think.

M.E sufferers are very strong, very patient, and very persistent.
 
M.E sufferers are very strong, very patient, and very persistent.
And God knows, we have to be.


The infuriating chameleoness of this baffling little bastard is maddening. That supplement/probiotic/sugarless/wheatless/whatever that worked last week turns on you this week. The foods you worked your way up to over two years of painful trialing and experimenting and crashing in flames and were so proud and happy to finally be able to eat again suddenly spin around viciously and rip a huge chunk out your @ss. The sleep issues that you thought you'd found hacks for all come rushing back, kicking your hacks aside like soccer balls, bouncing hard off your head as you toss and turn in the miserable, desperate pursuit of some sort of rest before the sun comes up or before late breakfast or lunchtime or maybe before dinner or just screw it. Sleeping late today.

Like you I also have agoraphobia, tho milder, I suspect, than yours. It's easier to live with when you pretty much live on, in, or under your bed, but it still leaves me feeling like a textbook case, hopeless, without any real future. Friends have given up gradually, as each offer of what they regard as irresistible fun is guiltily turned down by me over and over and over and over again. It's hard to maintain a meaningful friendship with an invisible, imaginary presence, and they just finally give up and wander off with promises of "Maybe next week,"

I feel your pain. That's not a little catch-phrase. I really do.

Have you browsed PatJ's list of diagnostics, treatment protocols, supplements that have helped in some, or many, cases? If not, I can re-post it here for you. It might help, at least in the deciphering of the trail of mystery breadcrumbs that honing in on the source and structure of all this is.

Chin up, and keep on punchin'. There's really no other way, but you already know that. I just like stating the obvious.

And keep writing your way around and thru and maybe even out of this. You're good at it.
 
There are actual medical tests for diagnosing SIBO. So it's not exactly alternative. But mainstream Drs tend to be a little slow to catch on to things, so I won't be surprised if your GP has never heard of it. I forget what the test are, but maybe someone will chime in. If you know the name maybe you can request it. If you just want to self treat then look at the GAPS diet and probiotics and things.
 
Also another avenue you could explore might be mast cell disorder, or as some of the older Drs call it histamine intolerance. There are diagnostic test for that too.
 
I forget what the test are, but maybe someone will chime in.
I believe it is called a Hydrogen Breath Test. My gastroenterologist (so mainstream medicine) wanted me to take it after he had done an upper GI and colonoscopy on me and diagnosed IBS. (He did also test me for celiac but that was negative.)

I turned down the Hydrogen Breath test though because it involved drinking glucose on an empty stomach and at the time I was suffering horrible, almost daily, episodes of hypoglycemia and I was terrified that I would pass out if I couldn't eat anything for hours beforehand and then had to drink a sugar syrup. (And to be honest, it isn't really assuring to me when they say something like, "Well you'll be with medical 'professionals' if that happens.")

They were upset with me for cancelling the procedure but when I asked them what the treatment would be if the test came back positive the nurse said, "probiotics."

Well, I can take those myself. :meh:

However, in your case, and if you don't have hypoglycemic incidents, having the diagnosis might be helpful to you since it sounds like you are struggling with unexplained weight loss.

Also, I think "gluten free" can still have microscopic amounts of gluten by government standards so if you did flair after eating the gluten free wheat you may be super sensitive to it. Just a thought.

You might also be able to self test by eating other grains that contain gluten to see if it is the gluten or the wheat that is giving issues. You could try rye or barley. I would just try to find a brand that isn't processed or packaged in a factory where they process wheat. I would also choose organic.

I know of a lady that uses rye for all her baking and does fine on it. So for her it isn't the gluten at all.

Just some ideas.

Judee
 

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