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AnnieZ

Syptoms Worse After Being Gluten Free For 3 Weeks

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I was diagnosed with Celiac disease May 27th and started immediately on a gluten-free diet. I have had severe diarrhea since June 2nd - over 2 weeks. No kidding, it's like I should be wearing Depends! It is definitely worse than before I went gluten free. Any clue why? Of course the first thing that comes to mind is that I'm still getting gluten in my diet, but I don't think that's the case. I have been vigilant about being gluten-free. I read how so many people feel better within a matter of days, and of course, want that to be the case for me. If you need more info (other symptoms, how I was diagnosed, etc. - just ask) Any feedback would be greatly appreciated!

Thanks, AnnieZ

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My body did a total purge about two weeks after I went gluten free. I craved pasta like there was no tomorrow and was so sick I thought it couldn't get worse. After a month I started to feel better and a year later when I finally could work a balanced diet again I felt fantastic (and dropped 25 lbs!)

So I would say keep with it, but I'm not a doctor. You might have something else going on too along with the celiac disease that is causing your problem. But I do recall the first month being absolutely miserable.


Gluten Free since 2003

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A lot who are Celiac/GI also have a problem with dairy. The enzymes responsible for lactose digestion are produced near the tips of the villi and when the gut is damaged, lactose digestion is impaired.

Yes it is possible you are still getting 'glutened' from hidden sources - after I had been gluten-free for 4 months I realised that I had been getting glutened all through from oats that I thought were safe but were probably contaminated. I hadn't thought about that! Prior to that I was still not well but assumed it was because my gut was so damaged and I was reacting to different foods so didn't realise that I was being 'glutened'.

A few weeks ago when I suddenly started to get a more obvious reaction I think my immune system had started to kick in properly, and my digestion had started to settle down more so it was more apparent.

Even thought I also dropped dairy at the same time as gluten (I knew I was also very dairy intolerant so I thought "in for a penny......"), and kept to a very simple, plain food diet, it still took several weeks before my digestion and stools settled down and actually changed several times which was a bit disconcerting. Now, it is fine and daily regular, although it gets a bit iffy if I get glutened or 'dairied'.

Try to be patient. The damage did not occur overnight and it will not heal overnight, but you should gradually see an improvement. My energy levels still go up and down but I am considerably better than I was. Annoyingly though I keep getting knocked sideways by viruses!

About 2 weeks after going gluten-free I suddenly got some energy - 2 days later I went down with a rotten virus and couldn't pick back up. Four months into it I have just been hit by another one. I really can't win!!!


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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Annoyingly though I keep getting knocked sideways by viruses!

About 2 weeks after going gluten-free I suddenly got some energy - 2 days later I went down with a rotten virus and couldn't pick back up. Four months into it I have just been hit by another one. I really can't win!!!

I know what you mean about the sideways knocks. Fighting off the gluten for so long really does impair the old immune system and I seem to catch everything that is passing by. Had flu for three weeks over Christmas, felt good for a couple of days and then blam! acute bronchitis so I coughed for another three weeks. Just got over that and and felt good for a couple of weeks and my arthritis flared up so badly that I lost all body strength, couldn't even get off the john. Hurt my knee going through the contortions of getting up. Then, I tore a bunch of skin off my calf and had to keep my feet up for three weeks under threat of needing a skin graft, so that helped my knee too. Have been avoiding infections by staying in so that I am well enough to fly in a couple of weeks (when I'll probably catch something else on the plane) but a week ago lost a fight with my jammed front door. It threw me back into a little kidney-shaped table which fortunately splintered into tiny pieces or else I would have been worse injured. The physio is doing wonders on my back but since I got glutened over the weekend I am so gassy and bloated that I can't possibly lie on my stomach today!

I remember from my days of watching U.S. football a penalty called "piling on." That's what I feel is happening to me at the moment. Enough already! Except fpr those 2 weeks at the end of January I haven't felt good since going gluten-free. I want some rewards :P


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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AnnieZ,

I had really severe stomache aches after I went gluten free (April 15, 2008). We finally figured out that my body had not had to "work" at digesting my food for so long, it needed baby steps. I was eating salads every day because it was so easy to pack for work.

So, I went lactose free, and only eat salad about twice a week. I have rice, quinoa and other grains, lots of cooked veggies, fruit juices and the milder fruits like bananas and applesauce and low fat meats has made the difference for me.

I do not feel wonderful, but no stomache aches or multiple BMs, either.

I have also found that gluten free lipstick, shampoo and medications are important and may be your next project! The lipsticks from the mineral cosmetic companies like Everyday Minerals and Glo Minerals are gluten free. Lots of the store brands are not!

Celiac is hard! But I keep telling myself that it will get better. The women in my support group all say 6 months to 2 years before it's really better. I have to trust in their experience! Go find a local support group, it can really make the difference for you. Hope this helps!

Linda


Linda Jean

in Greenville, SC, USA

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