Confirmed Celiacs: How Long Until You Felt Better?

[David in Seattle]

I've been having some GI symptoms for the past 14 months (see this POST) which I think may be celiac. After reading some experiences of others with the condition, I hear everything from "I quit eating wheat and felt great in 4 days" to "It took me a good year to feel better". What is more normal in this regard? I have stopped consuming all gluten (paying very close attention to all obscure ingredients, etc) about 10 weeks ago, and I can't say I feel much improvement. I'm actually HOPING it IS celiac, since at least this is something you can DO SOMETHING about, but I'm getting discouraged. For those confirmed celiacs, how long did it take for you to notice improvement after going gluten-free?

TIA

David

[EJR]

Hi David,

I just read your other posts as well. Have you considered that carrageenan which is found in many foods

including ice cream may be causing your GI symptoms? I was drinking almond milk everyday and had one heck of a time before figuring out that the carrageenan in the almond milk was the culprit. There is quite a bit of information available on carrageenan (also known as agar). Just an idea. It took me over 4 months to figure out what was making me so sick. This happened about 3 years ago. During that time I had all kinds of tests and ended up getting my gall bladder out. Not sure it was really necessary. Unfortunately my GI system has been even worse since the surgery.

I'm not a 'gold-standard' biopsy diagnosed celiac but have positive results from Enterolab and also from genetic testing. I have been on and off (for brief periods only) the gluten free diet for about 1 1/2 years now. Obviously I'm still not better. It is very distressing not to have a firm diagnosis because for me at least it has made it difficult to stick with the diet. I tried gluten again about a month and a half ago and all I can say is that I felt even worse so I am back to gluten free again.

Please do check out the information available on carrageenan. I'm sure the ice cream you mentioned in a previous post would have it.

Hope you are able to resolve your GI symptoms. It seems sometimes that all we can do is to keep trying.

Joyce

[Reba32]

I noticed a difference within a day of going gluten free. No bloating. It took about a week for the constipation to go away. 2 months later and I've lost some weight, been accidently glutened a couple of times (CC I'm sure, not blatant gluten ingredients), but my ears are still ringing and I have body aches. Just not as bad as when I was doing the gluten challenge.

How *you* feel going gluten free will depends on a whole bunch of different factors. What are and how bad are your symptoms prior to going gluten free? How long do you think you've had gluten intolerance/Celiac disease? And is it possible that it is something else entirely?

I would think that after 10 weeks you should have noticed SOMEthing different. It takes time to "feel better", but if you are celiac or gluten intolerant, you should notice at least a difference almost immediately.

[sandsurfgirl]

I'm at the end of week 4, but my first 2 weeks I accidentally got gluten hidden in things.

Right away my anxiety attacks stopped. I go back and forth between having tons of energy and then being fatigued again in the afternoon. Still having GI issues, and I'm starving all the time.

I had chronic allergy and sinus issues which are WAY better, nearly gone. I was also short of breath everyday and that is nearly gone. I have more patience and I'm less irritable, too. I was having a lot of dizzy spells, and now they are nearly gone, but I will have one here and there. The fluid in my ears is gone too.

But the GI issues are really bugging me. I still have bouts of D, and then C, and sometimes nausea or bloating. I'm trying to figure out if it's other intolerances or just an irritated system. I've had this my whole life and just got diagnosed at 40 so there is much healing to do.

[David in Seattle]

Thanks for the replies on this, very enlightening. I'd like to hear from more people about their experiences after diagnosis.

TIA

David

[lovegrov]

I was diagnosed by blood tests and biopsy. I was VERY, VERY, VERY ill, missing 10 weeks of work and in the hospital for 11 days. I started improving nearly immediately, but it was a painfully slow improvement. It took perhaps 8 months for me to feel really normal again.

richard

[jerseyangel]

My diarrhea subsided almost immediately but soon returned sporadically as I was getting the gist of the diet and the few other intolerances that cropped up. All in all, it took about 18 months until I was having many more good days than bad--but keep in mind that I was ill for over 20 years before being diagnosed. I had physical as well as nerological symptoms.

I got ill enough so that I couldn't work only about a year before diagnosis, though.

[med5224]

Hey David,

I started feeling better in a couple of weeks when I found out and started the diet. What I found out was that I am also nitrate sensitive and this gave me a similar reaction as if I had eaten gluten. If you haven't already try cutting the nitrates out of your diet.

Hope that helps or that you found out what it is that isn't working.

Monica

[cadams5120]

I'd only been sick for a few months. But have always had IBS like symptoms. However all of a sudden things went from bad to worse. So when I finally got a firm diagnosis and changed my diet, I'd say I was feeling "better" in 48 hours.

[AlysounRI]

David:

Don't get discouraged!!

And keep going.

I had IBS (still get attacks sometimes ...) - it was suggested I go ff wheat by an naturapthic doctor, and felt amazingly good afterward.

Then I fell of the wagon for a few years and the toxicity built up again.

I have been gluten free now for about three weeks - and I have never felt better in my entire life.

I am going to be properly tested at the end of March - and I very much suspect that I am a celiac.

My stomach woes have mostly gone away, my brain isn't foggy anymore, my energy had come back and I am no longer suffering from stiffness and achy joints.

As a consequence, my mental attitude has also improved. It's a 180 degree change. And **I** know it's the gluten free change in diet.

It's a huge change for the positive, so much so that all the little baked goods I see now have little biohazard symbols on them - and they just are seen as "poison!!" in my mind's eye now.

The other day I got very emotional because I started to really realize that I had never felt so good and I nearly broke down in tears - of joy

Three weeks really did it for me - I can't imagine how well I will feel in a year's time!!

That is my experience, David. Please just keep going - it is worth all of your hard work!!

~Allison

[jennifert]

I have been gluten-free for nearly 13, going on 14 weeks, and feel very little difference if any, and i like you am getting very discouraged!! My blood test was positive a few years ago but all the biopsies the last 3 years were negative but the doc still wanted me to try. I think Im giving it another 2 weeks and calling it quits. 4 months seems like plenty of time to see a differenece and like I said I really feel just about no difference so far- most people say they feel some relief in some way within a few weeks at least...so I'm questioning whether I have a different issue, as I'm sure you are feeling too! And I have been incredibly strick about not eating glutens- no cheating and all homemade natural prepared foods.

Good luck to you- I hope you start to feel better soon. Jennifer

[sandsurfgirl]

David:

Don't get discouraged!!

And keep going.

I had IBS (still get attacks sometimes ...) - it was suggested I go ff wheat by an naturapthic doctor, and felt amazingly good afterward.

Then I fell of the wagon for a few years and the toxicity built up again.

I have been gluten free now for about three weeks - and I have never felt better in my entire life.

I am going to be properly tested at the end of March - and I very much suspect that I am a celiac.

My stomach woes have mostly gone away, my brain isn't foggy anymore, my energy had come back and I am no longer suffering from stiffness and achy joints.

As a consequence, my mental attitude has also improved. It's a 180 degree change. And **I** know it's the gluten free change in diet.

It's a huge change for the positive, so much so that all the little baked goods I see now have little biohazard symbols on them - and they just are seen as "poison!!" in my mind's eye now.

The other day I got very emotional because I started to really realize that I had never felt so good and I nearly broke down in tears - of joy

Three weeks really did it for me - I can't imagine how well I will feel in a year's time!!

That is my experience, David. Please just keep going - it is worth all of your hard work!!

~Allison

Since you are already gluten free Allison, your tests will most likely come up negative. The doctor might try to talk you into eating lots of gluten and making yourself sick for 4 to 6 weeks in order to "prove" the diagnosis with positive tests. Since you have had such a good response to the diet, you might want to think ahead of time about whether you are willing to do that to yourself or not. Even if you are a gluten heavy the testing is often inaccurate with false negatives (not false positives though).

[AlysounRI]

I am going to a Gi doctor as an informational session first.

I want to hear what he says.

I'll have to weigh the pros and cons of going back on a glutinous diet in order to get a positive result.

I don't know what will happen with a blood test(s).

I feel in my gut (pun intended ...) that I am a celiac.

Besides the obvious everything points in that direction.

I am thinking I might have to get an endoscopy to prove any diagnosis, however.

It's going to be tricky but I am very curious.

So for me this is an informational session.

I'll let you know what happens.

So here is one more question.

Do any of you actually use schedule A to deduct medical expenses and the cost over and above of gluten-free food?

~Allison

[ksymonds84]

Hi David, it took me about 1 1/2 years to finally feel better. For me it was not knowing soy was also an issue that made my healing time longer. It is common for some Celiac patients to also have problems with dairy (often times temporarily)and soy according to my G.I. so if you don't see some improvement you may want to consider eliminating these two for awhile and see if it helps.

[jennifert]

Allison, you can only deduct if you are officially diagnosed by a doctor as having celiac- that is my understanding...so I would save your receipts and if you are officially diagnosed by the GI doc then you can deduct. Jennifer

[Guest Dori827]

Thanks for the replies on this, very enlightening. I'd like to hear from more people about their experiences after diagnosis.

TIA

David

Hey David, I see you are in Seattle. You may be interested in a Celiac Meet-up group. You can find it here: Open Original Shared Link

[AlysounRI]

Allison, you can only deduct if you are officially diagnosed by a doctor as having celiac- that is my understanding...so I would save your receipts and if you are officially diagnosed by the GI doc then you can deduct. Jennifer

Hi, I gathered that

And that is what I am doing, receipts and keeping a little ledger with those receipts.

If I am I will be prepared for next year's taxes.

We shall see,

~Allison

[burdee]

Hey David, I see you are in Seattle. You may be interested in a Celiac Meet-up group. You can find it here: Open Original Shared Link

I checked the meetup link, because I'm also in Seattle and actually live close to Greenwood. I used to lead the SNOKING Celiac group in Bothell until I turned the group over to Kaili McIntyre of DaVinci's gluten-free Bakery and Cafe. Do you know whether Kaili still leads a group? Is your 'meetup' a regular meeting? I'm interested.

SUE

[bbbjenkins]

Hi David,

I can see you already have quite a few responses which is great. I'll add mine. Typically when someone posts "How long until I feel better?" they are looking for reassurance, which is only natural. Unfortunately there are so many individual variables in terms of healing--age, other health issues, consistent treatment, accurate diagnosis, etc--it is very difficult to say how long your recovery might take. For myself, after struggling with crushing fatigue and acute diarrhea for about 8 months, I got a huge boost after being gluten-free for only 2 weeks. I mean the change was dramatic. My loperamide use decreased from 2-4mg a day to 2mg every other day. That's the good news. The bad news is that after almost a year, I have really not seen much improvement, or perhaps the improvement has been so incremental I haven't registered it like I did the dramatic improvement I had in the first two weeks. I am attributing my 'glacial' healing to two things: I live with a 3-y-old and a 43-y-old neither of whom are gluten-free and I'm pretty sure cross contamination is an issue (this is true for a lot of Celiac's, by the way). With the impossibly cute 3-y-old I sometimes feel like a cloud of gluten hovers around her and of course it is not reasonable to expect her to understand Celiac's disease. I sometimes think I will move myself and a refrigerator out to the garage and live there like a hermit until I get better, dammit! Also, it's easy to blame my 3-y-old but guess what? I'm not so perfect either. Just the other day I discovered that the carob chip Perfect Food Bars I love to munch are not gluten-free like their peanut butter cousins. Then there is the issue of well-meaning friends and restaurants who believe they are gluten-free but really aren't. This is a tricky one for me since my (paranoid) instinct is to never eat out and never, under any circumstance, eat over at friends because gluten is ubiquitous and friends and restaurants are not likely to get it right unless they've put in as much research time as I have. Just two nights ago a good, smart, well intentioned and careful friend said (re some food she'd prepared)"I think it's gluten-free, but now I'm not sure I really know." So, David, I'll recommend what I really need to reaffirm for myself, which is: 1) You can't be too vigilant re gluten and 2) Give yourself a B12 shot about once a week for a month or so--I found this to be immensely helpful re my fatigue, though you might want to consult a doc or some advanced board members on this site re the risks. My sense is that they are few and it was easier for me to just order the injectable B12 online and begin giving it than make a doctor's appointment, wait for the results (which can be tricky re B12 levels) etc, etc. Lastly, because I can't remember if you've confirmed your Celiac's dx, I'd put some energy into doing this. I understand the gold standard is small bowel biopsy, but history + gene markers seem pretty reasonable and reliable while being much less invasive. Good luck to you. I hope this helps,

Brent

[Zorba]

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