Not sure what to think

[AaronM]

Hello all!!

I'm a 43 man, started to feel weird about 2 years ago and my symptoms were intermittent and did not affect me all at once, but I was having increasingly frequent night sweats, to the point where it was happening every night and that took me to the doctor. I deliberately postponed a doc visit for months because pandemic was kicking in hard back then.

I had bloating, mild headaches, abdominal pain, heartburn, acid reflux that would wake me up at night, LOTS of gas (I'd wake up/sleep farting like there was no tomorrow), very mild red [not bumpy] patches on my torso that would appear/disappear in minutes, had to swipe a few times a day as I would "feel" like I was leaking (I wasn't, I guess) and of course, night sweats, from aggressive to mild, but it came to a point I'd sweat every night, and most awkward, apparently my body had a fixed schedule to sweat, about 2am, like a clockwork. I also have to say the sweat was localized on my upper chest only and it didn't smell like sweat at all. To be honest, I always was under the impression it wasn't exactly sweat, but my body getting rid of toxins. Weird I know, but that's how I felt.

Accidentally I spent a week lactose free and felt a little better, no bloating nor headaches and my night sweats got soft, but ate a pizza and the next day I felt really sick and sweated a lot for days. Talked about it with my doctor (that started by treating symptoms like the reflux and asking for the whole blood work routine/etc) and he decided to ask for celiac disease/lactose blood tests. Have yet to make the lactose one but my TTG IgA (0,8) and DPG IgA (1,30) came out as negative. I'm going to schedule a biopsy this week.

Since my doctor mentioned those tests, I'm in lactose/gluten free diet (blood work was done with me on 4th week gluten free) and basically all my symptoms have disappeared, no joke, all but the night sweats, that have since become way less frequent and I dare say quite minimal, aside from one day where I accidentally glutened myself using mustard to season some chicken (my reaction was aggressive night sweats only, for about 2 nights and then it started to go mild again). Now it's been a month gluten free and there are nights were I don't sweat at all. I also felt "detoxified" after my first gluten free week, like my mind was sharp in a way I can't describe, it felt like I removed a rock from my head, I felt light, less anxious, like I had this brain fog that vanished, really don't know what to say about this, but it's real.

I'm following a diet, made myself a food chart to understand how I react to foods and I'm being very basic on the kitchen, everything I eat is supposed to be gluten free.

I also had reactions (basically more intense night sweats) when eating peanuts, sweet potatoes and garlic, so I also cut these off.

I understand by reading here and other sites that celiac disease might make one lactose intolerant for a while so I'm also avoiding dairy, but the foods that triggered me have neither lactose or gluten, so apparently I'm also at least sensitive to fructans or lectins? Is this normal/common?

I'm not sure if I have some sort of NCGS or I'm celiac but my body definitely responds well to the restrictive diet, but as the blood work came out negative, I'm confused. What do you guys think?

Thanks!

 

 

 

[cristiana]

Hello there Aaron, and welcome to the forum!

Well... it certainly sounds as if you have been experiencing a lot of celiac-type symptoms there but having read and re-read your account I am still not sure if you did what is known as a "gluten trial" before you had the blood tests.  I'm from the UK and here it is usually recommended that someone needs to eat normal glutenous bread, two slices a day, for at least six weeks, before having the blood tests, in order for there to be enough gluten in the system to generate a response to it. 

I wonder if you could clarify?

Cristiana

 

[cristiana]

Also... it is important to have been consuming enough gluten prior to an endoscopy for the same reason.  Do keep this in mind before booking yours.   You may wish to clarify this with your gastroenterologist.

[AaronM]

Hi there Cristiana, thank you for the warm welcome!

I was close to 4 weeks (24 days) gluten free once I took the blood test, but I had symptoms after accidentally cooking w gluten about two weeks earlier, severe night sweats. I understand a couple weeks or so to be somewhat ok regarding the antibody detection window. My doctor told me indeed the tests may not detect it but found the window was still reasonable. It was anxiety that led me straight to the diet, I just want to feel ok, but I agree with you I could have impacted the tests by doing this.

As for the endoscopy, I read that the tissue damage, if present, should take 1 to 2 years to fully recover, so I think maybe willingly exposing myself to gluten again to be unnecessary if I act asap, but I'm no doctor so I wouldn't argue here, this is just what I read online about celiac disease diagnosis.

I'd be reluctant to get glutened at this point, since I'm trying really hard to update my journal on how I react to being gluten free since its feasible for me to do this.

I'm on my 5th week gluten-free now and I've been trying to have a full week of no night sweats, but I always manage to introduce something supposedly gluten free and ruin my stride (about two nights ago I sweated almost like I did before the diet, the only thing different that day according to my journal was that I ate a lot of peanuts and used a generous layer of a skin cream that I learned only afterwards to have gluten on its composition, cut them both+lots of water, got myself two normal nights after that!,) reason why I asked about non gluten food like lentils, bananas, garlic or even peanuts, since I tried to introduce these and got symptoms the night after.

Just trying to fit the pieces together. My personal guess is this is at least a NCGS that led me to be sensitive to other foods as well, but it is very confusing to adapt, like, can I react to cosmetics? Should I stick to a whole FODMAP+gluten-free diet (what I'm trying to do now)? I think a diagnosis at this point would add close to nothing, because treatment for celiac disease/NCGS would be quite the same for at least a good while if the latter, so maybe I'm cutting corners, I don't know, I'm quite confused on the right approach but I am so happy to be living without the bloating, the headaches, quite anxious to see night sweats gone for good and I absolutely see improvements here. I've been having trouble sleeping a full night for more than a year now, those nights that I'm not sweating have been a bless. Thank you.

 

[AaronM]

Forgot to mention I spoke to my doctor past week, a day before the blood tests and he did not mention I had to eat gluten for the biopsy, he just asked me to go asap. I'm yet to talk with the endoscopy clinic personnel, I'll ask them about consuming gluten before the test!

[cristiana]

Hello again Aaron

The journey of trying to track down food intolerances can be a long one.  I think it is really good you are on your way to finding out if you are a coeliac or have NCGI because at least you will have one important answer, one way or another.   (Although you are quite correcting in stating that the treatment for NCGI and coeliac disease is the same, in Britain (not sure where you live?) there are benefits for finding out for sure, because if one has coeliac disease one is entitled to a lifelong follow up care package with the National Health Service, including annual blood tests, access to a nutritionalist, DEXA bone scans to check for osteoporosis etc etc.   You may wish to find out if this sort of follow up exists where you live). 

In any case, I would advise while you are on your journey to keep a detailed food diary every day, because as you are already finding, patterns do start to emerge of reactions to various foods.

A friend of mine had a lot of reactions from all sorts of random foods and in the end strongly suspected yeast was the problem.   She paid to see a consultant who did some skin tests and sure enough, she had a massive reaction to it.   That is another possibility worth looking at.

Because I don't know enough about the subject of how long to eat gluten for prior to an endoscopy, I would definitely find out for sure from your team that you have been eating enough to show a reaction before having the endoscopy, as it would be a shame to have to redo it.  Also - crazy as it sounds - make sure they are actually going to be taking several samples of your villi.   Ridiculous as it sounds,  I have a couple of friends who were given endoscopies but no samples were taken!  The doctors were looking for gastritis and h pylori, but never looked for damage further on in the gut.

Do come back if you have any further queries.

C.

 

[knitty kitty]

@AaronM

Celiac Disease causes malabsorption which results in malnutrition (vitamin and mineral deficiencies).  Checking for nutritional deficiencies is part of proper follow up care for people with Celiac Disease.

Having NIGHT SWEATS is a symptom of Vitamin D Deficiency.

Vitamin D is a fat based vitamin found in oily fish (like salmon and sardines).  Milk, orange juice and enriched cereals have supplemental synthetic Vitamin D added to them.  

Vitamin D is important in regulating our immune system.  Our immune system has Mast cells that release histamine in order to attack "foreign invaders."  These "foreign invaders" can be bacteria, gluten, and LECTINS.  This is "Mast Cell Activation Syndrome."  Without enough Vitamin D, the mast cells can run rampant after exposure to these triggers.  Vitamin D regulates the mast cells, making them less likely to release histamine.  

 

I had horrendous night sweats where the bed clothes would be soaked through.  My Vitamin D level was next to nothing.  I took Vitamin D 3 supplements and have gotten my Vitamin D level into the eighties nmols where Vitamin D works as a hormone and regulates the immune system.  Current levels of thirty to forty nmols are too low to have this effect.

I also followed the Autoimmune Paleo diet (AIP diet) which cuts out lots of those Lectins by excluding nuts and grains.  The AIP diet is more strict than the FODMAP diet.  I stayed on the AIP diet and had great improvement.  After a few months on the AIP diet, I was able to expand my diet to include more foods that contain Lectins like on the Fodmap diet.

Here is your reading assignments....

"Banana lectin (BanLec) induces non-specific activation of basophils and mast cells in atopic subjects"

https://pubmed.ncbi.nlm.nih.gov/30039691/

And....

"Vitamin D contributes to mast cell stabilization"

https://pubmed.ncbi.nlm.nih.gov/27998003/

Knowledge is power.  

Please discuss with your doctor the benefits of supplementing with vitamins and minerals to restore proper functioning of your body.  Taking a good B Complex vitamin, vitamin D, and mineral supplements can help restore your health.

Keep us posted on your progress!

 

 

 

 

 

Edited August 17, 2021 by knitty kitty
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