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Confused About The "healing Crisis"

loxleynew

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loxleynew Apprentice
loxleynew
Posted

Ok so Ive read about the herx reaction otherwise known as the healing crisis. I was wondering since everyone goes through it I suppose. Does it just magnify whatever symptoms you had prior to going gluten free? Does it also on top of that add new ones?

Like for instance I seem to have gotten new symptoms (diharea, headaches) along with magnifying my old symptoms that I had already. It just doesn't seem right to me that it gets THIS BAD before it gets better. Like my symptoms went from bad to 3x worse just 8-10 days on this diet.

I didn't quite find anything in search about this, sorry if it has come up before.

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

I have several thoughts...

1. It takes time to heal on the gluten-free diet. Depending on your symptoms, the first few weeks (or even months) can be a roller coaster of ups and downs.

2. A lot of people get more sensitive to gluten once they cut it out of their diet. For example, after I was gluten-free for two months I started getting an itchy rash when I was cross-contaminated. This made me realize I needed to be a LOT more careful about restaurants and processed foods.

3. You could have the flu... or something totally unrelated to celiac :(

4. The "herx" is a reaction some people get during treatment for candida overgrowth... that might explain why you weren't finding the information you were looking for.

5. Maybe some of your symptoms are things you thought were just "normal" for you... only now you realize they're related to gluten and you're not willing to put up with them! This is a good thing.

6. Maybe gluten is not your only intolerance... dairy, corn, soy, eggs, nuts, and grains in general are problem foods for a lot of people. Is there anything you started eating a lot more of when you went gluten-free? For me, that was corn... and it was causing some of the same symptoms.

mftnchn Explorer
mftnchn
Posted

This seems to happen at times. I experienced after going gluten-free, and again after going on SCD 15 months later. I also have lyme disease, and the borrelia spirochete bacteria that is the main cause of lyme gives off toxins when it dies in the body and produces a herxheimer reaction. A few bacteria are known to do that.

A lot of people have described ups and downs during the healing process for months, and can be longer than a year.

In addition, with food allergies you can go through this type of thing. For example in the past, my allergist had me do a five day fast and then food challenges. He warned of this happening, but said it should clear by the fifth day, which it did for me.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possibly way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

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    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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