Feeneyja

Gluten Challenge

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I was gluten free for my daughter who is gluten sensitive (NCGS) for three years and noticed I would get sick when I ate it occasionally. I underwent a gluten challenge for celiac disease. During my challenge, I became incredibly dizzy and had terrible constipation (among other symptoms).   I only lasted on the challenge for 1 month. I did not test positive for celiac disease, but since the challenge is supposed to be 12 weeks long, it's really unknown if I haveceliac or not. In any case I now have the NCGS label too and went back to gluten free. 

With gluten free my symptoms have mostly gone. The dizziness is better but has remained a bit, mostly in the morning when I get up, when I eat, and when I'm tired. I have low blood pressure and noticed with the dizziness I would sometimes have heart palpitations. I started to pay attention to my pulse and noticed it would start at 52 and jump to 102 with no real exertion (in the morning) and that seemed to coincidence with the dizzy spells. I also noticed that sometimes it would go from the 102 high and then plummet to 62.  I did some looking and found POTS. There seems to be an association with celia disease/gluten sensitivity.  

I'm wondering if anyone had a triggering of POTS with a gluten challenge?  It's a bit frustrating and I had really hoped the dizziness would resolve once I went gluten free again. Or did I trigger something that I now need to deal with and won't really go away?

I'm seeing my doctor today as a follow up and will ask him about POTS, but don't know if he even knows what it is.  He checked my hemoglobin levels thinking I was anemic. It was 12.7.  Normal (but low normal).  I'm thinking of asking for a ferritin check. I have heard that low ferritin can affect POTS and it is also associated with gluten intolerance. 

Experience and suggestions would be appreciated. 

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Hello and welcome!  I am sorry you are having these problems and seeking a definitive diagnosis.  I hear you about the dizziness.   With the associated climbs in your heart rate, it does sound like it could be POTS/dysautonomia, but I am just curious as to whether you have the dizziness all the time even without a high heart rate.   This is my main problem.   I can have times, in fact most of the time, without tachycardia on standing, or a problem with abnormal blood pressure, but am dizzy anytime I am upright or try to do any activity.      Wish I could comment on the connection with gluten sensitivity, don't know, but since they don't know what causes POTS and these issues, whether or not it is autoimmune, it certainly is a possibility.   Smart to ask for a ferritin level.   That usually isn't done along with a standard blood count, so a good idea.   Good luck to you in finding answers.   As others here on the forum will certainly tell you, if the problems continue, it would be good to see a doctor who is familiar with dysautonomia issues.   Take care -

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Eliminating gluten helped improve my POTS symptoms rather dramatically. And yes, even one small exposure to gluten can set a sensitive person back for a while until your body can heal.

A damaged gut from stress, antibiotics, pesticides, gluten, viral/bacterial/fungal/parasitic infections, and poor diet can cause intestinal permeability, inflammation, and difficulty absorbing nutrients, leading to deficiencies. It may help to explore ways to heal the gut lining naturally as well as supplement with more easily absorbable whole-food vitamins and minerals (zinc and magnesium especially). Cutting out processed foods, added sugar, and/or dairy may also help relieve symptoms as you heal from the gluten exposure. It took me a while (years), but with a rather strict organic, whole-food diet (avoiding most grains, dairy, sugar, and additives), and gut-healing supplements like gelatin/bone broth/l-glutamine, I was able to get rid of my disabling POTS symptoms.

Recently, I also discovered that excess histamine (related to poor gut bacteria) was a problem for me. If you have trouble with probiotics or probiotic foods, you may be interested in histamine-degrading probiotics (i.e. Custom Probiotics d-lactate free).  My best advice would be to find either an integrative health physician or someone who looks at the body as whole for healing the gut as well as your dizziness. In my case, they were directly connected. 

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Not much to add to the good advice just two things that crossed my mind...  you said in the morning you saw the heart rate increase, could that be when you are less hydrated? I know for me it makes a huge difference and with my feeding tube now I never go the night without hydrating. Saw a marked improvment after my feeding tube was placed directly related to having fluids overnight. I know not possible for most but some people will chug down water in the morning before getting out of bed to achieve the same result. Secondly, yes, ferritin/anemia can affect POTS, it does for me. I'm treated by a hematologist for my anemia and have iron infusions about every 11 months. I show improvments in my POTS after the infusion and more energetic as well, to a degree lol! It's not a cure all, at least in my cade, but every little bit helps. My hematologist, whom I saw today, believes that I have an absorption problem that may extend beyond iron and we may look into that in the future.Hope your dr is able to work with you and you find some answers!

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