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Seriously, How Long Is This Going To Take?

LoriG

By LoriG
in Coping with Celiac Disease

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LoriG Contributor
LoriG
Posted

Hello-

I have been gluten-free 3 months and dairy free 6 weeks and seriously, I am not that much better! My ND says it can take anywhere from 9 months to 2 years for the gut to completely heal.

This is an extremely difficult diet to follow especially since I'm not feeling better. I would be so much more motivated if I felt better!

I must say the constipation is better, but I think that was related to a magnesium deficiency along with celiacs.

My BIGGEST complaint is chronic fatigue and irritability, which I have suffered for years and years. I also am hypothyroid and I know that is playing a part, too. Hoping gluten-free will help my thyroid in the long run.

Please offer some encouragement so I keep going! I feel like I am suffering with no end in sight.

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happygirl Collaborator
happygirl
Posted

Were you diagnosed with Celiac, and if so, how?

Lisa Mentor
Lisa
Posted
Hello-

I have been gluten-free 3 months and dairy free 6 weeks and seriously, I am not that much better! My ND says it can take anywhere from 9 months to 2 years for the gut to completely heal.

This is an extremely difficult diet to follow especially since I'm not feeling better. I would be so much more motivated if I felt better!

I must say the constipation is better, but I think that was related to a magnesium deficiency along with celiacs.

My BIGGEST complaint is chronic fatigue and irritability, which I have suffered for years and years. I also am hypothyroid and I know that is playing a part, too. Hoping gluten-free will help my thyroid in the long run.

Please offer some encouragement so I keep going! I feel like I am suffering with no end in sight.

Hey Lori,

If you have been totally gluten free for three months, you should be seeing some healing effects.

Have you check you cosmetics, shampoos, toothpaste, meds, supplements, i.e. anything that can get into your mouth.

Do you share a toaster, gotten new wooded spoons, have a clean chopping board, replaced your scratched non-stick pots and pans? Do you share a mayo jar, butter, peanut butter or other condiments with non celiac people?

If you do have a Celiac diagnoses and need to go gluten free all these things should be look into.

Sublinqual B-12 (it desolves under your tongue) helped me alot with the fatigue.

helenabbadi Rookie
helenabbadi
Posted

Don't give up, although I can relate. I've been gluten-free and CF for about 5 months, I'm still having lots of problems. I never thought my irratability was ever gonna go away. It took about 4 months for my irratability to finally subside! So don't give up, and hope you feel better soon!

jerseyangel Proficient
jerseyangel
Posted

Hi,

I would tend to agree with the recommendations that momma goose offered.

I'll add that it took me about 4 months to turn a corner--so to speak. That was for the GI and neuro symptoms. The fatigue and anxiety took quite a bit longer--probably 18 months or more. At the 2 year mark, I felt substantially better.

Try and hang in there--the fatigue is a tough one. :)

mftnchn Explorer
mftnchn
Posted

Hi Lori.

You might want to check out the lyme disease thread, as symptoms can be quite similar.

Also, yes it can take a long time it seems. I am over 6 months and still very much up and down. It is nice when it it a cut and dried answer, but it isn't always.

Soy definitely causes abdominal symptoms for me, I am better GFCFSF.

mamaw Community Regular
mamaw
Posted

Hello

I wish I could say everything will be fixed by going gluten-free but that is not always the case. I agree it can take 6months to two years or more .... but you must remember you didn't get to this point overnight either so it does take alot of time for our bodies to heal.. Please don't give up because all of a sudden you will start to notice changes when you least expect it......

The hypo can play a big part in this picture..... I almost died because of hypo thyroid & not being treated correctly... It has caused my heart to go into A-Fib & after several years of sickness I'm on beta-blockers & ect.I found out it is nothing to play around with.. so also treat the thyroid issue as well...

B-12 has been a big help to me. I also drink the ready made Kombucha tea from Whole Foods. It gives me energy & a feel-good feeling ....

You will get better & I'll say a prayer that it comes about soon.

mamaw

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LoriG Contributor
LoriG
Posted
  • Author

Thank you everyone for your speedy reply!

It sure helps to hear I am not alone and this does take awhile. I have 2 friends who also said it was at least 6 months before they felt better. Yikes!

To answer some questions: I am being careful about cc as best I know how. I was diagnosed by enterolab and I will check out the lyme disease info. My 2 biggest symptoms of fatigue and mood stuff seems to be what takes the longest to get rid of!

Thank you for your encouragement.

bakingbarb Enthusiast
bakingbarb
Posted

I am in the same boat. I feel better in all ways except fatigue. When I walk up my stairs I have to sit down. UGH :(:angry: It does make me sad and angry at the same time. I used to think I was wonder woman. We have a family, I garden, I bake, I do all the cooking and most of the cleaning and I worked. Now I am preparing to go back to school for a year or so. I need to be able to walk into that college and be able to make it up the darn stairs!

All of my other symptoms have cleared, thankfully the brain fog too. That was the worst and also one of the fastest ones to leave. But this being tired is beyond anything I have ever felt.

Oh and the 18th was one month for me!

hathor Contributor
hathor
Posted

It can take longer than three months (or six weeks depending on how you look at it). Sometimes I think it takes longer for those of us on the C side to heal than those on the D side. But that may well be selective perception and memory on my part. I do remember asking and being told by a number of C folks that they started seeing improvement around three months. But since dairy is such a constipating factor, you are only at 1 1/2 months.

You've already been asked about gluten CC. I assume you have been carefully reading labels to make sure there is no casein or caseinate ingredient? Sometimes these things get added into items that folks normally wouldn't view as dairy, such as "lactose free" nondairy cheeses.

You could have a third intolerance. Soy seems to be a common third one. You could do a two-week trial without it and see how you feel. Or if symptoms come and go, keep a diet/symptom journal (assuming you don't already) and see if you can discern any patterns.

Try to stay the course. It is frustrating that it takes so long to heal. I sometimes felt like it must be something else, because eliminating the intolerance items didn't make me feel perfect right away. But then I would accidentally get some of them and feel even worse and realize, nope, I have problems with these things all right :o

Offthegrid Explorer
Offthegrid
Posted

I second trying to go off soy.

I felt better only a few days once off soy, but have been having some minor relapses here and there from accidentally eating soy. It's in a lot of stuff!

hathor Contributor
hathor
Posted

I just remembered that some believe soy can have harmful effects on the thyroid. I don't know that there is a consensus on this and I've never researched the possible link. It may be something for you to look at, as well as other foods that have been linked by some to poor thyroid functioning (like cabbage, Brussels sprouts, and millet, in addition to soy) -- if you haven't already. It certainly won't hurt you to do a trial without soy and see what happens.

Or you can get the Enterolab soy test.

LoriG Contributor
LoriG
Posted
  • Author

Thanks again for the tips.

Yes, I have read a lot about soy, too, but honestly I mentally cannot handle cutting that out, too. I don't have symptoms that come and go so it is hard to determine a pattern. I watch my soy consumption because of my thyroid.

Yes, I am watching ingredients as far as dairy. I have a friend allergic to dairy so she's been very helpful.

I think I have accepted that this is a long healing journey and being only 3 months isn't really that long since I believe I had this my whole life. I will continue to be patient....

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