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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New Diagnosis. GI issues. Questions

Messages
4
I'm a 47 year old male. Formerly very active runner/biker. I am newly diagnosed with CFS and could use some help being pointed in the right direction. My symptoms started 6 years ago after a viral illness (coxsackie) and were mild and intermittent. They are now severe and between episodic and constant - PEM, POTS (tachycardia only), fatigue, nausea and malaise.

My biggest question surrounds my gut. If I do not eat enough, which is nearly constantly, it triggers a relapse of symptoms as severe as if I over-exert myself. Does anyone else have this? And I feel worse eating protein. I feel like I constantly need carbohydrates. On a good day when I can get out for a 10 minute walk I have to eat right after I get back. When I was still exercising, I noticed that the time it took until I would feel hungry or bonk got shorter and shorter and shorter. I have checked my blood sugar and it is never lower than around 70. Hemoglobin A1C is 5.4. I do not have IBS symptoms of constipation or diarrhea. During my relapses, my nausea is bad and my appetite is terrible.

Tests to look into? (negative gluten allergy so far). How is the gut biome best assessed or addressed? Dietary changes? I tried gluten-free and dairy-free briefly and felt worse, perhaps because of less food overall, which is terrible for me. Probiotics? Fecal Transplant?
 

Booble

Senior Member
Messages
1,390
I don't have any answers for you but I can confirm similar situation. Sometimes I feel like I need a constant IV drip of food! I'm slim and don't weigh that much and I think I have low blood volume so I'm not sure if that is part of it. After I take a walk I definitely need a little something. And during current flare up I get nauseous very easily. Often just after drinking water. *sigh*
 

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
Yes, I also have problems that feel like a flare up when I don't eat regularly, particularly enough carbohydrates. Mostly this happens for me when I spend too long in bed in the morning (the whole not sleeping thing and too tired to get out of bed). A long time between dinner and breakfast will leave me shaking and weak. While the shakes go away after I get some food in me, the extra tiredness can last for a day or so. The muscle weakness/shakes feel to me like the same feeling as if I had gone to the gym and lifted weights to shaking exhaustion. Only it's fixed by eating, not resting. I never had that sort of issue before ME/CFS, so I assume it's related. I've also caused disease flares by trying intermittent fasting. So, it seems to me we need to eat frequently.
 

Booble

Senior Member
Messages
1,390
Wabi-sabi -- yes, fixed by eating rather resting. I totally related to that. I could never do fasting!
In January which was month 2 of bad virus I lost my appetite and was eating about 300 calories a day -- forcing myself to get in even that much. It was an awful cycle of not eating making me feel sick and feeling sick making not have an appetite.
 

Booble

Senior Member
Messages
1,390
Zebra, just read the other thread and am smiling about the donut. I hadn't had a donut in many, many years as well and got one a few months ago when out walking and feeling faint. I felt guilty getting it! But, Oh, man, not only did it taste amazing (apple cinnamon filled from a chinese bakery), I felt outstanding afterwards.

One food thing that helped me reduce eye migraines (those stupid flashing lights that last 20 minutes) and give me energy is Bel Vita Biscuits. They are kind of like a cereal in the shape of a biscuit. I do the brown sugar/cinnamon ones. They do have sugar and also vitamins (B vitamins in particular) and their pitch is 4 hours of energy. And you know what? They really do work. The sugar amount is equivalent according to the package to a bowl of Barbara's Oat Square Cereal. Not healthy exactly but not as bad as super sweet cereals, bars and cookies. They have been a bit of a godsend to me for the last couple years.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Tests to look into? (negative gluten allergy so far). How is the gut biome best assessed or addressed? Dietary changes? I tried gluten-free and dairy-free briefly and felt worse, perhaps because of less food overall, which is terrible for me. Probiotics? Fecal Transplant?
Welcome to the forum.

You might try a Viiome gut test, whi h gives you an overview on the capabilities of your microbiome to do several processes, and would highlight what you're having trouble with and make recommendations for changed to diet, probiotics and other gut supplements. It's not perfect, but I've been doing gut tests for 10 years and I find if the most useful. Yih can order it yourself on their site.

A more conventional test like a GI Map might rule out common parasites. You could also get tested for viruses in the gut

And. Cyrex Labs has a number of interesting tests, calked arrays that might be worth looking into.

Then there's a tick borne illness that makes people allergic to meat. Alpha gal?

Or you could do a Do It Yourself project using the book The Food Intolerance Bible loaded with lots of self help quizzes and solutions.

You might also look into mast cell activation which many of us have. Tests include prostaglandin D2, chromagranin A, histamine and tryptase, though the last two are usually not elevated, and unfortunately they're the only tests many doctors run and so miss a lot of patients.

My family has done multiple fiod allergy tests. None are perfect. I found doing IgG/E/A U S Biotek tests was most useful for me and no test picked up my corn allergy which is bad as corn is in most drugs... An elimination diet is the gold standard.

Most ME/CFS patients have nutrient deficiencies, including B vitamins, antioxidants, minerals, and amino acids. As your diet is giving you trouble, it would be prudent to do comprehensive nutrient testing at some point, like the Genova Diagnostics NutrEval. It has been a key part of my path to success, and I repeat it every 9 months or so and adjust my protocol.

Best wishes.:hug:
 
Messages
4
Thank you so much, everyone. Some of this is comforting just knowing there are others that have experienced these same symptoms.
I have contemplated the Viome labs.

I don't know much yet about mast cell activation, but I remember reading from Jen Brea that she still has this.
 

BeADocToGoTo1

Senior Member
Messages
536
Hi @G80304

Sorry you are struggling. There is much overlap in symptoms with my case. Doctors sadly often overlook all this and do not have time to really dig in to underlying possible causes.

Please check for nutrient deficiencies or any malabsorption issues including pancreas function, exocrine pancreatic insufficiency (EPI), small intestinal bacterial overgrowth (SIBO), liver function, Candida yeast overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, Celiac. Tests such as Genova Diagnostics FMV or Great Plains Lab Organic Acid Test (OAT) are great for an overview.

Exocrine Pancreatic Insufficiency (EPI), SIBO, Candida

EPI is definitely something to dive into and rule out. This thread has a lot of info on SIBO, Exocrine Pancreatic Insufficiency (EPI), Candida overgrowth, reflux, malabsorption issues:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Tests to Consider
  • Stool test pancreatic elastase
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Comprehensive Stool test for parasites, pathogenes, dysbiosis. E.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.
  • Stool test chymotrypsin (similar to, but not as accurate as elastase)
  • Intestinal permeability. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was: Cyrex Laboratories - Intestinal Antigenic Permeability Screen. It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.
  • Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.
  • SIBO and Candida overgrowth. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough. A breath test for SIBO and something such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) can be helpful here.
  • Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT)
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
  • Lactose intolerance: Have you tried dairy free for 4-6 weeks? Does it help if you add lactase pills with anything dairy?
  • Food sensitivities: Any food allergy and sensitivity tests completed? What about gluten sensitivity tests?
  • MRI of the abdomen with MRCP with contrast: It gives a 3D picture of the gallbladder and high resolution liver, pancreas, gallbladder, ducts, stomach intestines. Amazing test.
  • Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI as these only cover symptoms, do nothing about root cause, and can make things much worse. Have you tried the following simple selftest:

    A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

Food and Drink

An HbA1c of 5.4% is still a bit high so have you taken a close, hard and honest look at absolutely everything you eat and drink.

Have you kept a food diary for a while and note how you feel and whether there are correlations? Have you lost muscle or bone weight? Have you kept track of body composition (e.g. with a scale that can indicate weight, body fat %, body water %, muscle mass, metabolic age, bone mass, visceral fat, and basal metabolic rate)? Have you tracked calorie intake versus your personal requirement? How many grams of carbs do you eat and drink per day and per meal? How many grams of protein?

The energy swings and carb craving are sometimes linked to a diet imbalance, and being a 'sugar burner' as opposed to an efficient 'fat burner'. Do you eat within a specific window of time during the day? How often do you eat?

Do you still eat in restaurants or cafes as there is no control on quality and ingredients that could be impacting you?

Do you drink any calories? For example, it is still surprising to me how many people think that drinking juice or low fat milk is healthy for you.

Of course smoking and alcohol are no-brainers when you are not doing well. I always thought I ate healthily and yet little did I really know until my health took a nosedive. And if you have trouble digesting and absorbing, dietary changes are tough to see results from in the short term. Do you ever have silent reflux or acid reflux (with heartburn feeling)?

What is the quality of your water? Are you drinking, e.g. mineral, well, tap, bottled (plastic or glass), chlorinated (all US tap water), fluoridated (all US tap water), reverse osmosis, reverse osmosis with minerals added back in, filtered (what kind?), restaurant or cafe water, etc.? Try a few different types of mineral waters (glass bottle of course as you don't want the extra hit of plastic particles and leached chemicals) to see whether that helps.

Another thread on diet that might be of interest where I also put a few posts:

https://forums.phoenixrising.me/threads/what-diet-do-you-follow.78920/post-2254091
 
Messages
4
@BeADocToGoTo1
Thanks. very comprehensive. Are you a clinician?

I was probably running a calorie deficit for several years prior to onset of symptoms. I was running 50-70 miles per week on average most of the year and doing 4-6 hour bike rides a couple times a week the rest of the year. I was very carb heavy and had been vegetarian for 23 years at that time. My weight was way down prior to every race I trained for and bounced back up 5 pounds or so afterward. I started eating meat again in 2015, a year into CFS. I put weight and muscle on when I switched to doing crossfit stuff during a year and a half without symptoms. I was eating more good fat via avocados and macadamia nuts at that time. Once I had return of symptoms, I started poorly tolerating protein and even fats.

I stopped alcohol 5 months ago. No sugary drinks. In fact, all I can drink really is water. So boring. I had reflux years ago when I was doing Ironman but realized it was due to drinking OJ and the horizontal position of my tri bike. Once I gave up OJ and changed to a road bike the reflux went away.

Tried gluten and dairy-free for a while but felt worse. My A1C is actually lowered from 5.6% a few years ago despite not exercising and eating more carbs. Don't eat out much. Lots of salads and veggies, typically. Quit chocolate and kombuca, which I'd been eating and drinking for a few years. Sometimes wondered if the kombucha changed my gut, but my twin brother drinks more than I did and is the picture of health.

I have wondered about pancreatic enzymes and even an insulinoma. I am getting re-tested for insulin level, c-peptide and such.

I haven't looked into SBO or intestinal wall permeability, but I want to look deeper into that. Some of these things I don't know much about yet and wonder if all of it is legit. I feel bad saying that as that is the attitude that keeps a lot of us from getting diagnosed. But I know in medicine there are some things out there that people promote and are solutions looking for a problem. So, in essence, I am trying to be less of a skeptic and approach all of this with an open mind. At the same time, narrowing down the seemingly endless number of things to focus my time and energy on is REALLY tough.
 

Dechi

Senior Member
Messages
1,454
I found this and came back to your thread to post it because it might be your answer.

https://www.hfme.org/adrenalinesurgetips.htm#657796417

»Signs that a M.E. patient is overexerting or running on adrenaline, may include the following:

· Very fast, loud and continuous talking is a sure sign of an adrenaline burst. The patient may also sit up or stand for longer than usual (without realising they are doing so) or get ‘hyper’ and fired up to undertake tasks that they would usually be too ill to do. Sleeping and resting is very difficult as the patient feels ‘wired’ and very ‘unfatigued.’

· A lack of facial expression and ‘slack’ facial muscles and/or extreme facial pallor.

· A burning sensation in the eyes and/or an inability to tolerate visual stimulus and to keep the eyes open.

· Excessive water drinking (to try and boost blood volume) and excessive hunger and a desire for sugar- or carbohydrate –rich foods. Even after eating, the patient may still feel as if they have very low blood sugar and may need to eat far more often than usual. »
 

BeADocToGoTo1

Senior Member
Messages
536
@BeADocToGoTo1
Thanks. very comprehensive. Are you a clinician?..

My MD family members call it an 'experience specialist' :) No, I am not a clinician, but learnt it all the hard way since dozens of doctors and specialists later I was still declining rapidly. I ended up writing a book to educate doctors and provide help to sufferers with similar issues. I went from bedridden with no hope in sight back to fully functioning. Since you are/were an avid sporter (like I was) have you looked into the whole Primal living, for example Mark Sisson's websites/podcasts/books?

It sounds like you have already made many steps in the right direction when it comes to nutrition. It is tough and often slow progress, and so much conflicting info out there.

A little side question, but what oil do you use for cooking as that can impact your health and blood sugar levels too?

Gluten and dairy-free are ok for a while to do a temporary reset diet and figure out if you are sensitive to those elements. But if you are not sensitive, things like full fat kefir, yoghurt, and hard (real) cheese are good for the microbiome and body. Gluten-free is often a marketing term and some think a 'gluten-free' product is healthy when it is often full of more sugar, soy, chemicals and poor fillers. For a non-celiac the benefit of going gluten free is to eat fewer carbs and processed foods, not replace wheat products with higher glycemic replacements. Sourdough whole grain based bread with as few ingredients as possible and no sugars, no preservatives are easier to digest.

The kombucha craze is fueled by the marketing machine too, and beside potentially drinking too much of it, what other ingredients are in it is important too. Many are filled with sugars. I also only drink water (mineral, not tap! ), coffee and tea.

It might be worthwhile discussing a prescription for bile salts and pancreatic enzymes with your doctor, to see whether it helps lower symptoms. If it takes a while for the doctor to get you a prescription, there are over the counter ones like Dipan-9 (Thorne) or Enhanced Super Digestive Enzymes (Life Extension ) that you can experiment with. They need to be taken with every single meal or calorie drink. The OxBile that I used briefly was from AllergyResearchGroup.

By the way, it is good to be skeptical! If I had stuck with everything my doctors had told me (4 who had mentioned that my pancreas was fine) I would not be here today. And inversely, when reading websites, forums, etc. it is always good to think what the motivation is behind the information. It is tough to sometimes to know what to trust, especially when it comes to supplements.