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Kates77

Nearly Two Months Gluten Free - Feeling Worse :(

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So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

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Hi Kates77, I really do understand ... last October I had positive blood tests for celiac so I went gluten free for about 4 weeks (i felt fantastic) but unbeknown to me, I had to have an endoscopy so i had to re-introduce gluten. My endoscopy date got changed twice so I had a miserable christmas as I was trying to hold out until the endoscopy date on 4th Jan. Anyway, in the end they stopped procedure as I was trying to pull tube out but recently confirmed dx due to gene test etc.

For the first 3 months gluten free I was really miserable, spacey, no energy, brain fog, grouchy tummy, flu type symptoms much worse than ever before. I did have a drastic improvement in my vision and itchy scalp within the first 4 weeks but that was all.

I'm now finally starting to see improvements but boy i really know it when ive been glutened. Along the past few months Ive discovered other food intolerances like soy, coffee and dairy and im keeping up with my vitamins, probiotics and digestive enzymes so maybe im now heading in the right direction :) . Have a look at the newbie101 thread.

I've just come back from a mad 80s fancydress weekend and my energy levels kept up with the rest of them :) . I even braved the gluten free food on offer as there was one chef who seemed really keen and knowledgeble to get it right. Infact, when I got home I glutened myself !!

Also, I don't think at first, I was taking it serious about cross contamination, but have since learnt I must be sensitive afterall.

It takes time and patience and they'll be ups and downs but eventually (Im hoping), they'll be more ups !

Good luck

Edited ..to correct my silly spelling mistakes!!

Edited again... just realised, when I mentioned about me braving the gluten free food in a restaurant. That is NOT good advice, please avoid eating out if you possibly can. Try to get used to making your own food (simple wholefood ingredients).

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What was that about doctors pledging to do no harm?  Anyway, I'm really sorry you guys.  My thinking is that you can heal faster with a super pure diet of produce and unprocessed meats and then add those other foods after you are feeling better.  Keep a food/symptom journal and you should be able to notice additional food intolerances too.  Also as mentioned above, you can eliminate soy and dairy during this time.  You can try adding them back later.  Hopefully with a really good diet, you can get better in a couple of weeks.  I am one of those super sensitives, and that works for me.  I am now able to eat diary and my only other food intolerance is oats.  I hope that you feel better soon.

 

One great thing is that you know that you responded to the gluten-free diet initially, so that you know that you are on the right track.

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Hi Kates77,

 

People do tend to become more sensitive after they have been gluten-free for a while.  You may need to really look close at everything you are taking in, including vitamins and meds, drinks and anything else.   Getting better may take some real basic simple foods for a while.  No or very little processed food can help.  Low sugar and low carbs too.  Recovery from celiac disease damage can be more like a marathon than a sprint.  It takes times and constant vigilance until you get it down.  But recovery is a nice thing when it happens.  So keep going! :)

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Thanks guys! I really appreciate the advice. Hopefully I feel better soon :) And good luck to you all on your Gluten-Free journeys :)

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So the very first time I went gluten free was the best week of my life. I felt energised, happy, motivated and so so HEALTHY.

 

Then, my doctor told me I had to eat gluten prior to my endoscopy, so I ate pastas, bread, pies etc. three meals a day for five days prior to my operation. I'm really angry with my doctor because I didn't realise that I wouldn't have to do that if I was planning on getting the endoscopy within three months (because it takes that long for any damage to heal).

 

Anyway, I get diagnosed with Celiac Disease and go back to my gluten free diet. It has nearly been two months since then, and there has been no improvement whatsoever. I'm back to being moody, depressed, unmotivated, weak, tired, bloated, farty, pimply, and I even have issues that I never had before like extreme diarrhea.

 

Has anyone had any experience with going on a gluten challenge after initially being gluten free? I think it's a bit different to being glutened, because usually when you get glutened it's just a small amount so you recover quite quickly. But what about when you purposefully ingest a large amount of gluten over five days? When can I expect to feel better??? Please reply :)

Oh goodness. I am so sorry to hear that! I am however glad to see your post as I am experiencing a very similar thing. My difference is that I have been gluten free for almost 3 weeks and I am feeling worse and worse but same symptoms as you. I just want to go eat some real good bread and say "to heck with it" just to feel normal again.

 

Please let me know if I can be of any support for you! 

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    • Thank you - I had my endoscopy today and the doctor said he didn't see the telltale signs of celiac but he did biopsy. There were a number of other things he noted, like a polyp found in the fundus, and my stomach was very inflamed.       He said to start a gluten free diet right away anyway.  It is hard not to get ahead of myself and wonder about the results and if they come back negative.   
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    • Becca4130, Being gluten free for a while would cause your blood serology to test negative but many people choose not to finish a gluten challenge because of how bad they feel on gluten. NCGS is a real thing even though most doctors don't recognize it today. See this care2 article that explains what might be  happening in your case. https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html The rate of positive blood serology is 2x higher than biopsy confirmed Celiac disease. see this new research about the rate of NCGS (serology postive Celiac)  in the general public without positive biopsy.  . . though for this research they considered both serology (blood tests) and biopsy confirmed celiac diagnosis as the real rate of Celiac disease in the general public. quoting Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals." Which they say  quoting again "means that numerous people with celiac disease potentially remain undiagnosed" or I think in many causes NCGS is not being declared because they consider a blood positive test inconclusive in the absence of a confirmed biopsy. and it sounds like what is happening in your Case especially since you have been gluten free long enough to not test positive on your blood work. See the Care2 article which is typically 6 months and your antibodies goes down naturally when you are gluten free that long. quoting "Though the cause of the two conditions seems to be very different, the study confirmed that the best treatment is the same for both conditions. After six months of only consuming gluten-free grains, the NCGS group reported a significant improvement in their digestive and non-digestive symptoms, and the immune system markers identified earlier in the study had normalized." ****this is not medical advice but what makes sense to me after having been serology (blood) positive for antibodies that went down on a gluten free diet. You might also see this thread that talks about some of these same issues. I hope this is helpful and good luck on your continued journey. I also meant to add this link http://www.mdmag.com/medical-news/not-everyone-predisposed-to-celiac-disease-develops-it Or It could be you have not developed celiac yet because your gut biome has protected you so far from developing it. quoting "The study authors determined that while about 40 percent of the population have a genetic disposition to celiac disease, just about 1 percent develop the condition upon exposure to gluten. Mice who housed Pseudomonas aeruginosa bacteria (Psa) in their guts – transplanted from celiac patients – metabolized gluten different than mice treated with the probiotic Lactobacillus.

      The researchers further observed that Psa produced gluten sequences that initiated inflammation in celiac patients. Lactobacillus was used to detoxify the gluten.

      "So the type of bacteria that we have in our gut contributes to the digestion of gluten, and the way this digestion is performed could increase or decrease the chances of developing celiac disease in a person with genetic risk,” senior study author Dr. Elena Verdu explain(s)" Again I hope this is helpful. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
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    • After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.
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