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How long did it take after going gluten free to notice a difference?

in by TrailrunnerMom
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I recently went gluten free, and while my stomach doesn’t hurt anymore, I still feel tired. I was hoping the fatigue would decrease and am wondering how long it takes to notice a change?
Also if you have some gluten now and then for special occasions, do you notice symptoms coming back right away, or it is fairly easy to ‘cheat’ once in a while without bad effects?


About TrailrunnerMom

Conditions: Gluten sensitivity, Glycemic issues (hypo/hyperglycemia), Psoriasis

Doctors seen: MD – primary care, Naturopath

Treatment: Prescription medication/shots, Gluten free

Children: 2

Age: 35-44

Favorite Flower: misty blue limonium

Favorite Movie: Eternal Sunshine of the Spotless Mind

Stress Reliever: taking walks to the lake with my dog

TrailrunnerMom
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2 Answers

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Your question is a timely one as gluten and intolerance to gluten is absolutely the hottest topic in diet and health care right now. I have a few questions about your history but I'll do my best to give an answer based on what you've provided. Mainly, I am interested in knowing if you've had a small-bowel biopsy to assess for true celiac disease. The blood tests are a good start but a bowel biopsy is the gold-standard for diagnosis. Also, are you certain that your thyroid is in range and your medication dosage is correct and have you had basic lab work to rule out anemia or other abnormalities? Finally, I'm not clear on exactly how long you've been off the gluten.

If you have not had a complete work up for celiac, you need to have that done. You've clearly got symptoms and you've got other autoimmune diseases so you're at risk. If it turns out that you've got celiac, the answer is fairly straightforward; you need to be 100% gluten free always and forever with no cheating and you need to learn all of the hidden sources of gluten (like salad dressings, other grains, etc). It can take 6-12 months for the gut to heal and for generalized body symptoms to resolve.

If you've had a negative work up for celiac (and other medical reasons have been ruled out) but you feel better off of gluten, the answers are more ambiguous. Mainstream medicine doesn't yet recognize the idea of "gluten-sensitivity" despite that there are, literally, millions of anecdotal reports by people who feel better when not eating gluten. My suggestion would be to follow the celiac protocol and plan for six months as your goal - that is total elimination for that duration of time with NO cheating (sorry, you asked:). If your fatigue resolves, then staying off the gluten seems like a difficult but comparatively small price to pay to keep your energy high so do it and do it for good. If, on the other hand, you've not reached the place you'd hoped to get after a committed six-month trial, you might allow some small amount of gluten back into your diet to see how you tolerate it. Try to do it methodically and keep a journal. If you get worse, get off the gluten again; if things don't change much, then I'd suggest looking elsewhere for the source of your fatigue.

I will just add that fatigue is one of the most common concerns that patients express to both mainstream and alternative providers. It is somewhat of a plague and solutions are not easy to come by because it is usually 'multi-factorial' meaning it's the result of many things - not just one. If you've got a partner or a best friend who is willing to spend the time and be painfully honest with you, may I suggest the exercise of doing a 'life inventory' to see if you can identify other contributors to your fatigue. Basically, you want to go through all aspects of your life to see what might be contributing; the extra person is there to keep you honest. Are you eating well and drinking plenty of water? Are you getting 7-9 hours of sleep every night? Do you over extend yourself? Do you avoid people who bring you stress? Do you (could you) possibly be suffering from depression or anxiety? Do you drink excessive amounts of alcohol? Do you get some exercise on most days? Or, are you pushing yourself to exercise too much? Do you do anything to rejuvenate or revitalize? Do you ask for help when you need it and accept it when offered? And there are some medical things not mentioned above to consider: seasonal allergies and their medications often cause fatigue, obstructive sleep apnea (OSA) is a major culprit in daytime fatigue (often people snore loudly when they have OSA), many medications cause fatigue.

After your inventory is complete, see if you can find 4-5 places to make small adjustments. The sum total of those little changes may well be the map for finding some of your missing energy. Good luck.

Kathi Kuntz, RN, MSN
20

About Me:


Answered on November 24, 2012

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Although I'm not officially celiac according to tests It took me about 6 months of going gluten free to feel better in the digestive department. My energy has come back as well but I'm still not back to pre-auto-immune levels. I never cheat with the gluten free regimen. In the early stages I went through a phase where I ate a lot of "gluten free" packaged foods like the Udi's gf cookies, gf quinoa pasta, Udi's gf bread. These really helped make the transition less harsh. I could still have things that were like what I used to eat but they didn't have gluten. Now I've moved on to a diet more quinoa/rice and vegetable based, lots of vegetarian recipes. I still eat meat so I get some recipe ideas from people on Paleo diets as they avoid grain as well. Maybe you should consider instances where you "cheat" to be part of the transition stage. Eventually you will have gluten free staples that you can rely on and you wont find yourself going back to foods that will upset your digestive system.

When I first went gluten free I would usually notice immediately if I ate something with gluten. I avoid anything that even has preservatives in it like the plague, still weary of that roller coaster. Long ingredient lists = hidden gluten or something terrible as far as my stomach is concerned. After a while if I accidentally ate something with gluten or some kind of packaged junk I would end up with a more mild stomach discomfort for say 3 days. Now I feel like I might be able to get away with eating less healthy as my stomach issues aren't really an issue BUT I think the effects of eating gluten/processed food are cumulative and I just know it's too much of a slippery slope. Plus I don't like that food any more so it's really not worth it.

I would also recommend doing an "elimination diet". Ditch the major food allergens, each one for maybe a month or more and see how you feel without them and monitor how you feel after reintroducing them. I believe the major allergens are wheat/gluten, soy, dairy, peanuts/tree nuts, eggs and shellfish. That helped me identify dairy as a bit of a problem. I can tolerate it but too much causes acne and sinus issues for me.

My most recent revelation as far as maintaining functioning energy levels is that I need to pace myself. I think that sounds more simple than it is. I read the whole "spoon theory" thing (linked below if you haven't heard of it) and that was really helpful for me because I could identify with trying to communicate to people that I was more than just tired. For me validating this all encompassing exhaustion was a first phase. I think I've moved on to another phase where I've recognized that when my energy levels are back up I need to proceed with caution and make myself rest before I hit that wall where I'm completely spent. If I get adequate rest regularly my complete and total exhaustion episodes are less frequent. I have had to rearrange my life/"I'll do everything" personality. I'm still struggling to accept, respect and advocate for my limitations. Kathi Kuntz's suggestions for doing a life inventory are along the lines of what I ended up doing more or less.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

sarah_m1
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About Me:

Conditions:

Idiopathic thrombocytopenic purpura (ITP)

Doctors seen:

MD – specialist

Treatment:

Gluten free

Age:

25-34
Answered on April 17, 2013

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