What is the role of the gut in in ME/CFS?

[A.B.]

Some weeks ago, I had a relapse occurring within a few days of taking home brewn Tibicos probiotics. The gut symptoms have disappeared, but I still feel mentally and physically impaired. It's possible that this is a coincidence, but I've also noted that the usual relapses tend to happen shortly after meals but without any apparent reason. In both cases the recovery takes weeks or months. Since the start of my illness, my digestive system has slowly become more sensitive (mainly to "industrial" foods). I should mention that I tolerate normal store bought probiotics and there is some mild benefit as well.

I'm wondering what is happening there. Is this some immune reaction, or indication of an unhealthy microbiome?

How common is this in other patients?

I know that this topic has been studied, but I'm not informed about it. What is known, and what is believed?

 

[Martial]

I would guess in most if not all, unless they have already actively been treating to heal their gut in their own ways. Chronic ill health and leaky gut are almost always paired together.

 

[ukxmrv]

When I initially became ill with ME it was acute viral and there were no stomach problems that I could see. These did not start until after I had been prescribed antibiotics to fight my tonsillitis a few times.

Then I began to vomit or feel nausea or have bloating after eating certain things. My ME viral symptoms did not react to what I was eating and appears to ebb and flow independently.

That said I tested positive for both food and inhaled allergies in tests in hospital (blood and scratch) and had EPD for the food allergies. This did help but once again didn't help the ME viral ones.

Probiotics did make the stomach symptoms somewhat better for the first ten years, and then they suddenly stopped working and now (have tried various kinds) they have little effect on my gut.

The only exception to this was MAF314 but it is supposed to have action other than as a probiotic (probably not the right words for me to use). Kefir has little effect on my stomach or my ME viral symptoms alone.

(Dr Chia did have a theory about non-stomach upper respiratory tract infections being related to stomach entrovirus ones but I can't currently find it. This may have some clues I think)

 

[xchocoholic]

Most of my reactions to foods aren't digestive symptoms. If you google leap food intolerances you'll find their website. On the front page under forms is a list of common leaky gut symptoms.
These are divided by systems.

I get neuro problems including ataxia from gluten, shiners from dairy, pimple like sores on my scalp from corn and phlegm in my throat from soy. I get the normal digestive problems from too many onions, broccoli, ribs, etc.

So I'd say my me/cfs has a lot to do with what I eat. Obviously I feel a lot better without eating these but I still have mcs, oi, pem, ? And all those auto immune diseases I got while eating gluten. I'm assuming based on current dx criteria that this counts as me/cfs.

Imho if they had a collective term for celiacs who continued to eat gluten and get a list of associated auto immune diseases I'd have that classification instead.

Tc .. x

 

[A.B.]

I get neuro problems including ataxia from gluten, shiners from dairy, pimple like sores on my scalp from corn and phlegm in my throat from soy. I get the normal digestive problems from too many onions, broccoli, ribs, etc.

So I'd say my me/cfs has a lot to do with what I eat. Obviously I feel a lot better without eating these but I still have mcs, oi, pem, ? And all those auto immune diseases I got while eating gluten. I'm assuming based on current dx criteria that this counts as me/cfs.

Imho if they had a collective term for celiacs who continued to eat gluten and get a list of associated auto immune diseases I'd have that classification instead.

For me there doesn't seem to be any specific food group that causes problems. I lived as if I had celiac disease for six months and there was no improvement in my overall condition. Some foods with lots of additives can cause surprisingly intense short term symptoms, but that's about it.

It is my overall condition, and the long term relapses that I'm interested in (these last too long to be merely a reaction to foods in the GI tract). So it's not celiac disease. What other explanations are there? Is this consistent with some autoimmune process? Some sort of viral re-activation? What could possibly explain these observations?

 

[xchocoholic]

For me there doesn't seem to be any specific food group that causes problems. I lived as if I had celiac disease for six months and there was no improvement in my overall condition. Some foods with lots of additives can cause surprisingly intense short term symptoms, but that's about it.

It is my overall condition, and the long term relapses that I'm interested in (these last too long to be merely a reaction to foods in the GI tract). So it's not celiac disease. What other explanations are there? Is this consistent with some autoimmune process? Some sort of viral re-activation? What could possibly explain these observations?

Celiac disease and gluten intolerance is being re-defined by the medical profession. Those who participated in the gluten summit explain this.

From my experience, we see celiacs all the time who need to completely eliminate all possible sources of gluten cross contamination in order to begin healing. Eating whole foods and closely monitoring everything you buy is the only way to avoid this.

And we see those who immediately feel great just by eliminating most of the gluten from their diets but are obviously being cross contaminated because they're eating out, eating gf foods, etc and gluten is everywhere. This group appears to be the ones medical professionals are used to dealing with.

I don't think anyone really knows why this is happening yet. So far I've seen several explanations from gut health (diverticuli, gerd damage, polyps, etc) and bacteria / fungus / parasites.

But if you're a celiac or gluten intolerant who's constantly being exposed to gluten or intolerant of other foods, symptoms may not show up immediately. We see this all the time too.

Most of the people I know with food intolerances can get by with eating a little. Repeatedly exposing myself to gluten cc is just making me sluggish nowadays. It's been tough justifying eating paleo now that I'm barely reacting.

I'm not sure what role virus reactivation plays. I should get mine tested tho since I have data from 1990 and 2004, 5 or 6 ? I had 3 positives with ebv being the highest. I'm not a fan of blood work tho. Lol.

Hth .. x

 

[A.B.]

Celiac disease and gluten intolerance is being re-defined by the medical profession. Those who participated in the gluten summit explain this.

From my experience, we see celiacs all the time who need to completely eliminate all possible sources of gluten cross contamination in order to begin healing. Eating whole foods and closely monitoring everything you buy is the only way to avoid this.

This is exactly what I've done. I was aware of accidental contamination that can occur in kitchens, and gluten appearing in foods one would never suspect, and was very careful. If gluten was a significant factor in my health problems I would have found out.

 

[xchocoholic]

For me there doesn't seem to be any specific food group that causes problems. I lived as if I had celiac disease for six months and there was no improvement in my overall condition.

I hear what you're saying but wanted to add just in case it applies to you that Dr Hadjivassilou (gluten ataxia) and maybe others by now recommend a strict gf diet for 1 year minimum. Dr H was saying that in 2006.

Several people in my celiac support group told me to give it 2 years based on how sick I was. And the ones eating gf foods all the time were wondering what we were talking about. Lol.

My ataxia vanished after 1 year gf without any warning. One day my legs dragged and I fell into everything and then it suddenly stopped. That still didn't mean I felt well tho. I still have several autoimmune diseases.

I'm not saying gluten is causing me/cfs because I'm not qualified but I am seeing others, like the NIH, say that cfs can be from untreated celiac disease or gluten intolerances. I see others looking at viruses, mold, bacteria, etc too tho. But I don't post about those because I'm not up on these and others are.

Imho, my reaction to dairy is a great example of how this works. I can eat all the dairy or ice cream I want without having any digestive problems at all. But I start seeing dark circles under my eyes within 2-3 days. If I continue eating dairy I will get the biggest and blackest shiners possible.

It takes my body a minimum of 10 days to clear these. My dr saw this once and knew that I knew what was causing these. I got the "what the hell are you thinking" look. Lol.

She told me if that's what dairy is doing to the outside of your body just imagine what it's doing inside. I kept trying dairy after that until it sunk in tho. It's tough to give up ice cream.

Better ? X