Dr. Martina Melzer, published: 07/10/2022
I've had intestinal problems for ages. But in the first few years after my 2009 Pfeiffer's glandular fever, my bowels really went downhill. That's why the first doctors I saw were gastroenterologists. The first diagnoses were quickly made: fructose intolerance, lactose intolerance, irritable bowel syndrome, intestinal adhesions (due to an accident).
Fructose and lactose
So my nutrition marathon began with the temporary renunciation of fructose and lactose - quite well-behaved under the guidance of a nutritionist. Unfortunately,
however, without any breakthrough improvements. This was followed by the low-FODMAP diet, which involves avoiding fermentable carbohydrates, such as those found in fruit, vegetables, bread and
dairy products. But here, too, the hoped-for success failed to materialize. And I admit: At that time I could not completely do without gluten, I was overwhelmed by it.
A few years later, a doctor advised me to eat a "high protein, low carb" diet - with no further restrictions. I threw myself into lean quark, eggs and protein drinks because I was a vegetarian and didn't want to eat meat or fish. The diet didn't help either. On the contrary, my stomach got worse and worse. I got terrible stomach pains after every meal, I was nauseous, I had cramps every day, I looked like I was pregnant because of my bloated gut, I alternated between constipation and diarrhea. I felt like I had a gut infection all the time, I felt really crappy. I lost weight, got weaker, had low blood sugar all the time, I was miserable.
On the Internet I kept coming across the leaky gut syndrome and thought: I have that too. I then had a test done, which was positive (even though this test is
controversial among doctors). Whether I had leaky gut or something else, I don't know for sure, but my gut was definitely inflamed. And I felt like my gut immune system was reacting to more and more foods with inflammation. I started buying nutrition books, looking into Functional Medicine, which is common in the US and UK. And
I found many people with ME/CFS who struggled with the same issues and wrote of leaky gut.
Then in early 2019, out of sheer desperation, I ventured to give up gluten after all. The trigger was the German researcher and gastroenterologist Professor Detlef Schuppan, who discovered certain ingredients in wheat, the so-called amylase trypsin inhibitors (ATI). According to his studies, ATIs (independent of gluten) can worsen chronic inflammatory diseases and autoimmune diseases, and avoiding gluten-containing and thus ATI-containing grains can sometimes significantly improve these diseases. Also ME/CFS. In some people, irritable bowel symptoms also disappear completely. They then probably have a non-celiac wheat intolerance or an atypical wheat allergy.
Watch or listen to my nutrition marathon (in German! Please activate subtitle via the settings button on YouTube):
Pasta and bread adé...
Avoiding gluten was a big thing for me as a passionate bread and pasta eater. Since gluten-free breads and pastas didn't taste good to me and were also incredibly
expensive, I gave up pasta and started baking my own bread alternatives. Unfortunately, the gluten-free diet didn't bring any significant progress in terms of my intestines, but it did in terms
of blood sugar stabilization. Since I had to give up my morning bread breakfast with jam, my morning blood sugar lows with cravings, stomach pains and tremors also decreased significantly.
Since my gut continued to be a problem and I had heard from so many people who got so much more energy through stark dietary changes and no longer had intestinal problems, my nutrition marathon continued. In the summer of 2019, I decided to try vegan. So in addition to gluten, I also gave up milk and dairy products. Whew, that was really difficult. No more quark, no yogurt, no mountain cheese (I love cheese!), no butter, no eggs. But after two to three weeks of abstinence, my gut suddenly felt better. I managed to get out of the very deep hole. As the weeks and months went by, the stomach pains subsided, the nausea, the constant gut infection feeling. A huge step forward for me. I think I was having a reaction to milk protein. That's what another test indicated (casein was in the yellow-red range). And yes, doctors don't usually recommend this test either.
From vegan to Paleo to Autoimmune-Paleo
But now another problem presented itself: protein deficiency. A doctor put me on it. He also found that I was low in iron and vitamin B12. When you eat vegan, you
have to make sure you get enough protein, and protein that is also digested well. I didn't have a good relationship with legumes because of my IBS, but they contain good protein. After lengthy
internal discussions, I decided to try the Stone Age diet. Yes, from vegan to Paleo.
So meat, fish, eggs, but no grains, as little processed food as possible, no sugar, lots of vegetables, lots of fruit, nuts, seeds. I even started drinking organic bone broth regularly! Actually unimaginable for me. My gut thanked me. It continued to recover. For a little over a year, my leaky gut has been gone. I had probably been missing some nutrients and perhaps the amino acid glutamine, which is important for the intestinal lining.
I even got on the so-called Autoimmune Paleo Diet (books by Dr. Amy Myers and Dr. Terry Wahls are helpful here, or google "The Paleo Mom") because it is supposed to balance the immune system and can stop autoimmune diseases. However, it was too strict for me, which is why I soon stopped it. I also couldn't stick with Paleo in the long run. I was constantly hungry, kept losing weight, and my body couldn't handle the severely restricted carbohydrate intake. However, I had more energy and my muscles became a little more stable. I started to reintroduce foods, ate a little more carbohydrates again, for example pseudocereals like quinoa and buckwheat.
Fasting: Not good for me at all
Again and again I read that people with ME/CFS and autoimmune diseases had great success with fasting. Of course, I had to test that too. After one day of fasting I
was close to collapse and had to stop. My body was too weak for fasting, my metabolism too much out of control. A doctor advised me to try the so-called Fasting-Mimicking-Diet according to Professor Valter Longo. This could bring the immune system back into
I kept up this moderate form of fasting for three whole days. Then at night I thought I was going to die and would call 911. My blood glucose meter revealed: blood glucose was at 48 mg/dl. It was really dicey! You can go into a coma and really die. So immediate stop. For my nervous system, this trip was such a trigger that I have been extremely sensitive to a drop in blood sugar ever since. My nervous system immediately responds with a shot of adrenaline, especially like at night between 1 and 3 am. So in my case fasting was counterproductive and I read that it is not recommended for people with autonomic nervous system dysfunction.
The marathon continues
My marathon continued. However, a little more relaxed, because I had already learned a lot and had first successes. For a while, I ate according to the Pegan Diet by Dr. Mark Hyman, who wrote a book about it. A balanced
diet, which I still roughly maintain.
Then I came across the Adrenal-Reset-Diet by Dr. Alan Christianson. This was supposed to get your weakened adrenals back under control. Parts of it have really helped me stabilize my blood sugar further and not fall into the next exhaustion hole immediately in the morning. In his book, Christianson gives more tips on what can help the adrenals.
For me, the most important thing was: very few carbohydrates in the morning, and if so, only complex slow-digesting ones, and lots of protein. At lunch, definitely eat some carbs and protein, so for example, not just soup or salad. And in the evening the largest amount of carbohydrates and again protein. This contradicted all the recommendations I had read or heard before. But it helps me, my body wants carbs and can't use fat as an energy source as well as I would like. For me, this is related to the weakened adrenal glands and the dysregulated HPA axis.
My IBS still remained. For the time being, my last attempt at a new form of nutrition: the so-called IBD-AID-Diet. This is a variation of the Specific Carbohydrate Diet (SCD) that helps some people with inflammatory bowel diseases like Crohn's disease and ulcerative colitis. The Unversity of Massachusetts developed this variation and I found it very helpful. The biggest takeaway for me was to puree many meals. My intestines were able to digest that much better and I was full longer. Since then, my high-speed blender has been used almost daily, and I've already scrapped the first one.
In the meantime I see nutrition in a much more relaxed way and I eat a lot more food again. I make sure to buy organic as often as possible, eat little processed
food, make a lot myself, eat plenty of vegetables and fruit too. I allow myself some oats, quinoa, potatoes, beans, lentils, tofu again. Also, important for me: a snack in the afternoon. I
continue to give up gluten (okay, there was a piece of cake the other day and I didn't die from it), dairy, sugar (with small exceptions) and coffee.
Oh that's right, coffee has been a big issue for me too. I love cappuccino and latte macchiato. But it has coffee and milk in it. Damn. I was able to replace milk with oat milk (tastes great!). But the caffeine excited me too much. It triggers the activating part of the autonomic nervous system, the sympathetic nervous system. And that is overactive in me anyway. This, in turn, unnecessarily stresses the adrenal glands. I got total trembling, stomach ache, dizziness, sweating, etc... after every coffee. So with a heavy heart, I cut out coffee. Fortunately, I can tolerate decaffeinated coffee with oat milk - but there is only a small cup in the afternoon and also only two to three times a week.
Nutrition is something that is very individual! What helps me doesn't have to help you - and vice versa. You may not tolerate completely different foods than I do.
That's why you have to become a detective yourself. In general, though, from my point of view, it makes sense to avoid all the highly processed foods, cut out sodas, eat lots of different
vegetables and fruits, with an emphasis on vegetables. Eat the rainbow, eat green leafy vegetables, cabbage varieties, and brightly colored vegetables and fruits.
Use slow digesting and complex carbohydrates from whole grains, legumes, etc. and avoid the fast digesting ones from white flour, sweets, juices and sodas. Try giving up gluten and dairy products for two to three weeks as a test, as they cause discomfort for many people. Also try avoiding coffee for the same period of time. Do you notice any differences?
PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw
completely different conclusions as someone else would. Simply because they fit my story. But every story is different.
Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their ME/CFS or other syndromes.