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Eva H

Do Symptoms Get Worse Before They Get Better On A Gluten Free Diet?

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Hi there,

I'm not sure if I'm in the right place to ask this but I've been on a gluten-free diet for just a little over a week and in the beginning I seemed to get a little better and now my symptoms are getting worse again. I'm just wondering if I'm detoxifying from being gluten free ( I know I've been completely gluten free!) So basically, do you get worse before you get better? I will also be doing a test for a dairy allergy and am not sure if this is a contributing factor or not. Any answers or insights would be greatly appreciated!

Eva :)

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Hi Eva, and welcome to this board.

Yes, often people suffer from withdrawal symptoms at the beginning. Plus, people with celiac disease cannot usually digest dairy for at least the first six months, because the tips of the villi are supposed to produce the enzyme lactase, which is essential for digesting dairy. If those tips are damaged or eroded, than you will at the very least have a lactose intolerance.

Many people with celiac disease are also intolerant to casein, and cannot ever have dairy again. The best way for you to find out which is the case for you is, to try dairy again in six months to see if you react to it or not.

For now, eliminate dairy to see if you feel better without it. Many people who are intolerant to gluten won't really start getting better until they cut out dairy as well.

You may have a dairy intolerance, which will not show up on allergy testing. True allergies will cause a systemic reaction soon after ingestion, like wheezing, instant rash, tingling on the tongue and your throat etc. So, unless you find you get that kind of symptoms from dairy, the allergy test will likely be negative.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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Hi, Eva. Welcome!

I'm rather new to this whole thing too, just over 2 weeks gluten-free and milk-free. But I have had the same thing, feeling worse at times than usual. Especially more fatigue, bloating, "flu-like." I expected the withdrawal symptoms, having gone through this with food allergies before. But, the way the symptoms come and go surprised me.

People on this board have been encouraging me to just hang in there, that it takes a long time.

The support we get here on this board is tremendous, it's really been a lifeline for me.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Hi there,

I'm not sure if I'm in the right place to ask this but I've been on a gluten-free diet for just a little over a week and in the beginning I seemed to get a little better and now my symptoms are getting worse again. I'm just wondering if I'm detoxifying from being gluten free ( I know I've been completely gluten free!) So basically, do you get worse before you get better? I will also be doing a test for a dairy allergy and am not sure if this is a contributing factor or not. Any answers or insights would be greatly appreciated!

Eva :)

I had similar difficulties - but it was because I hadn't realized how careful I needed to be about food being contaminated with gluten. Also, your system can be sensitive, in general, and to other foods as well.

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My experience is that it definitely takes more than a week. I've seen any number of posts now where people report the same thing.

My symptoms went back and forth for the first few weeks. Then things calmed down ... until I gave up soy and went through the same thing.

I still have symptoms after four months. I don't know if I've reacting to other foods, cross contamination, or my system just needs more time to heal. But I think I am making progress, slowly but surely.

I take it you have been extra careful about possible CC -- no gluten-contaminated wooden spoons or cutting boards, no envelope licking, no bits of gluten in old colanders, toasters, etc., no crumbs in spreadable items, etc. I've found I have to be extra careful now with items where it says "may contain traces" or made with shared equipment.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I'm trying to be very consciousness about cross contamination; however, I can see that there are a number of possible sources of small amounts of gluten. In China (where I am located) labeling may not be complete and even then I don't know if it is made in a gluten free environment. I maybe will try just pure whole foods for awhile, see if that helps.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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I cant say for sure I feel or felt worse (its only been a couple months since totall gluten freeness) I did however start cutting it out of my diet well before as I suspected it was the problem, I just didnt have the knowledge I have gained in the past couple months to see it hidden in other things...

I can pretty much say for the last 2 months I have been 99.9% gluten free (had 1 accidental glutening took me a week to recover from) I can't say I feel totally better however as problems disappear or reduce the remaining ones are screaming louder, or I hope they are as if I felt this bad before I was in very sad shape! Overall I would say I feel better but worse in some areas, does the muscle/back/joint pain go with this or is that just from those oh-not-so-comfortable-seats-in-the-locos?

Did I mention I just spent the last 3 hours on my feet in my kitchen cooking up meals for me to eat "at work" for the next um.... 2 weeks :blink: I love my freezer and its once again full of yummy gluten free meals for work :rolleyes:


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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