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Gluten-Free Diet Repaired Gut, But Celiac Disease Symptoms Continue

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Three years after dramatic bowel changes and swollen (bloated) abdomen, I was diagnosed with celiac disease from blood tests and the biopsy. Since then I have adhered rigidly to a strict gluten-free diet, including avoidance of any possible cross contamination, even ensuring skin products are gluten-free. Five months later a second biopsy showed that my villi have totally repaired since being gluten-free. However, I am still no better in myself - still have all the same symptoms after 8 months now on a strict gluten-free diet.

The strange thing is that prior to the firm celiac disease diagnosis, during the time when celiac disease was only suspected, I followed a strict gluten-free diet for four months and was no worse when I later came off the gluten-free diet and consumed as much gluten as I wanted (lots!)

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It is a puzzlement. I am assuming you have tried total elimination of all dairy to be sure that you are not casein intolerant?? Other than that, it is possible that some other foods are bothering you. I know I could never decide if it was corn or wheat that was my problem because the symptoms are the same whichever I consume. I am also intolerant of many other foods (many of these intolerances came about while I still had a leaky gut and I am hoping to add them back in soon). Have you tried doing an elimination diet for other food intolerances? Soy is an allergen that many celiacs do not tolerate well. Many of us also do not tolerate even the gluten free oats because of a similiarity in the proteins. Apart from additional food intolerances, I'm afraid I don't have much to offer. :(

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Three years after dramatic bowel changes and swollen (bloated) abdomen, I was diagnosed with celiac disease from blood tests and the biopsy. Since then I have adhered rigidly to a strict gluten-free diet, including avoidance of any possible cross contamination, even ensuring skin products are gluten-free. Five months later a second biopsy showed that my villi have totally repaired since being gluten-free. However, I am still no better in myself - still have all the same symptoms after 8 months now on a strict gluten-free diet.

The strange thing is that prior to the firm celiac disease diagnosis, during the time when celiac disease was only suspected, I followed a strict gluten-free diet for four months and was no worse when I later came off the gluten-free diet and consumed as much gluten as I wanted (lots!)

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That is a very good question. Sorry I can't help...just commiserate.

Removing gluten improved my digestive symptoms, but not many other symptoms. My follow up endo at a year after 99.999999% gluten free showed worsening damage to my villi -- which was very confusing for me. Turns out I needed to remove quite a few other foods. That your villi completely repaired in five months sounds fantastic to me -- but obviously not great news for you since you still have many symptoms of Celiac.

I hope someone else can suggest the next best steps for you - Good Luck!

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Exactly what symptoms are you experiencing?

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This interview might interest you. http://celiacdisease.about.com/od/glutenintolerance/a/Dr-Rodney-Ford-Interview.htm?nl=1

Have you tried a trial diet of only produce and meat?

Some of us are sensitive to lower levels of gluten than others. Some of us have trouble with small amounts of cc in processed foods.

That worked for me, and then I was able to add a few processed foods gradually.

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Thank you Dilettantesteph, the interview is interesting. I have never tried a trial diet of only produce and meat, so maybe I should.

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Consider trying Specific Carbohydrate Diet. It's a grain-free diet that was developed in the '40s for "sprue". Back then they knew that elimination of only wheat wasn't enough for everyone and they worked out empirically what foods worked best and what to avoid. http://www.breakingtheviciouscycle.info/

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Consider trying Specific Carbohydrate Diet. It's a grain-free diet that was developed in the '40s for "sprue". Back then they knew that elimination of only wheat wasn't enough for everyone and they worked out empirically what foods worked best and what to avoid. http://www.breakingtheviciouscycle.info/

Thank you for the link, Skylark. I'll hang on to it and consider the diet if/when I reach the point of total despair. The gluten free diet is challenging enough without following an additional rigid diet like that too.

I wonder how common it is for celiacs to continue with usual symptoms despite their guts being repaired?

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Thank you for the link, Skylark. I'll hang on to it and consider the diet if/when I reach the point of total despair. The gluten free diet is challenging enough without following an additional rigid diet like that too.

I wonder how common it is for celiacs to continue with usual symptoms despite their guts being repaired?

Very common.

It's funny how different we all are. I'd much rather try a restrictive diet than take amitriptyline. Medicines have made me so sick over the years that I view all pills with deep suspicion. <_<

By the way eating produce and meat for a bit like Dilettantesteph IS basically trying the SCD. :) It's that easy. :) You just have to be sure the produce isn't anything starchy like potatoes.

Also take a very close look at dairy. Many, many, many (maybe half???) celiacs can't tolerate it well at all. Casein is a sister protein to gluten.

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By the way eating produce and meat for a bit like Dilettantesteph IS basically trying the SCD. :) It's that easy. :) You just have to be sure the produce isn't anything starchy like potatoes. ~ Skylark

If it's that easy I will definitely try it, Skylark. Thank you. :)

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If it's that easy I will definitely try it, Skylark. Thank you. :)

Good luck! :) Meat, fish, eggs, nuts, seeds, non-starchy veggies, a little fresh fruit, honey instead of sugar and you're pretty much good to go. A lot of people get hungry without grains or potatoes because we're used to filling up on starch. If that happens remember to eat enough healthy fats like olive oil on your salad, butter on your veggies, avocado, whole olives, or a handful of nuts.

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I hope this isn't a stupid question but are you talking about a long-term or even lifelong diet there? It can't just be temporary until my gut heals, can it, because my gut has already healed (and I'm no better).

Also, is it just veg that has to be non-starchy, or fruit too? I ask because I eat lots of bananas (which are starchy).

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I was precribed amiltryptaline by a pain specialist some years ago to help with chronic spinal pain after a car accident. I found it didn't help at all, in fact it just made me depressed! I gave it a couple of months, and then stopped it cold-turkey, which apparently you are not supposed to do. The doc wanted me to wean off it gradually with tapered doses. I couldn't be bothered, and it wasn't a problem. I only felt better for stopping it.

With the benefit of hindsight my pain was being prolonged by gluten-induced inflammation, and I eventually sorted it out by a gentle programme of physio-led rehab-level pilates, and also a gluten free diet.

I agree with all the above posters that the logical thing for you to try is to tighten up on your diet for at least a few months to see if that helps. Although your doctors are telling you you have healed because you no longer have antibodies or flattened villi (and well done for that!), I never had them in the first place, yet my symptoms are very clearly alleviated by a gluten free diet.

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I hope this isn't a stupid question but are you talking about a long-term or even lifelong diet there? It can't just be temporary until my gut heals, can it, because my gut has already healed (and I'm no better).

Also, is it just veg that has to be non-starchy, or fruit too? I ask because I eat lots of bananas (which are starchy).

It's not a stupid question at all. What does healing even mean? You are healed in the sense of villous atrophy but there is clearly still some kind of issue. :)

The full SCD (or GAPS is a slightly different version) can eventually transition you back to eating some grains and starch. It's not a fast process. Both Elaine Gottschall (SCD) and Patricia Campbell-McBride (GAPS) talk about the whole process of healing taking two or three years. They also say not to expect to go back to cereal for breakfast, a sandwich for lunch, and pasta for dinner. If you turn out to be someone for whom SCD works, you will probably always rely more on meat, fruits, and veggies, though they say most folks develop tolerance for a little starch.

The idea is that your irritable bowel symptoms come about because you don't digest sugars and starches well with a generally inflamed gut. That means bacteria consume them instead, and since starches feed the wrong bacteria you end up in a vicious cycle of IBS and inflammation. If you can get the IBS episodes to settle down, starve out the bad bacteria, and seed in healthy bacteria with probiotics and fermented foods, you may find you tolerate more foods again. Limiting food for bacteria (the carbs SCD has you avoid) and eating lots of probiotics like the SCD 24-hour yogurt or GAPS sauerkraut gradually shifts your bacterial populations and allows your gut to fully heal.

Bananas need to be ripe enough to have black spots on the skin. I was thinking of them as a "sometimes" kind of food while I was on GAPS. I'm not sure eating a lot of them is a good idea at first. Green bananas and plantains are definitely too starchy. If this diet works for you, and you'll likely know after a few weeks, you'll be able to tell when you ate something too starchy.

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I second the Specific Carbohydrate Diet. I was in a lot of pain, reacting with stomach cramps to every food I put into my body, even water. I started the SCD and my symptoms receded quickly. During that period, if I accidentally ate rice or something, I'd feel it immediately. My only regret is that I didn't stay on it longer, because I think it works slowly and it takes a long time (as Skylark says) to get the full effect.

I don't know what your reservations are, but please, please try it. It was a pain to change my eating habits so drastically, but the effects were so welcome that I didn't mind so much.

Also, I think it's something of a misnomer to saw that your "gut" has healed when really you're talking about the villi of the intestines. The digestive system is a huge organ and includes much more than just that area.

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Anti - depressants are addictive. Some people like the buzz and the "don't have to care anymore" feeling.

The gut makes the brain chemicals which supposedly makes our moods bearable - sick gut = bad mood. This is why most celiacs benefit from a gluten free multivitamin including the B complex, or taking extra B vitamins on top of that, along with calcium and magnesium.

First we will have a look at this-

Vitamin B6 required for synthesis of neurotransmitter serotonin

http://www.mayoclinic.com/health/vitamin-b6/NS_patient-b6

And see here:

Aussie Hypoglycemic Association

Serotonin production has to have vitamin B6 and magnesium

http://www.hypoglycemia.asn.au/2011/the-serotonin-connection/

And then you must look at this:

Scientific American, Feb 12, 2010

Think Twice: How the Gut's "Second Brain" Influences Mood and Well Being

http://www.scientificamerican.com/article.cfm?id=gut-second-brain

Given the two brains' commonalities, other depression treatments that target the mind can unintentionally impact the gut. The enteric nervous system uses more than 30 neurotransmitters, just like the brain, and in fact 95 percent of the body's serotonin is found in the bowels. Because antidepressant medications called selective serotonin reuptake inhibitors (SSRIs) increase serotonin levels, it's little wonder that meds meant to cause chemical changes in the mind often provoke GI issues as a side effect. Irritable bowel syndrome

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You might want to get hold of Natasha Campbell-McBride's book if you're on antidepressants, especially if the bloating comes back when you test starch. (I goofed earlier. It's Natasha Campbell McBride, not Patricia.) Part of what the GAPS diet is supposed to help with is depression. I have more energy low-starch and my mood is overall better. Here is the website. http://gapsdiet.com/

Also a 3 billion probiotic is on the low side. I prefer 10-20 billion.

Just keep insisting on safe food with your partner. The guy I date is an angel about the gluten-free food, and always lets me pick the restaurant. He would never want to see me feel ill because of something as unimportant as food; we are going out for each other's company. My approach when eating at someone's home is to have only a small serving of rice or starch. Enough to be socially acceptable but not enough to mess me up. When I read the books on SCD and GAPS they seem to want you to do the diet perfectly but I seem to tolerate a small serving of rice or a single slice of gluten-free bread a couple times a week. A large serving will leave me sleepy after the meal, gassy, and sluggish the next day so I'm not inclined to eat a lot. :) At this point all my friends know I'm a salad/vegetable fiend so it's not too difficult. You'll have them trained to put out extra salad in no time if you go low-starch. ;) When I eat out, I just order lots of salad and veggies with my entree and skip dessert.

As Takala mentions, I really benefit mentally from extra vitamins and fish oil. Probably most of us are B12 or D deficient and low/deficient on iron. I take an "all in one" supplement called EmpowerPlus that helped me tremendously with depression.

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Some people like the buzz and the "don't have to care anymore" feeling.~ Takala

Certainly doesn’t have that affect on me – quite the contrary! I’m not too happy about resorting to a drug either. I’ve never taken anti-depressants in my life before but I’ll give anything a try that a leading celiac specialist prescribes, if only to say I tried it and it doesn’t work.

I'm near speechless that somebody would make themselves sick to see somebody twice a week. He's "inconvenienced ? by the cross contamination issue ?" Too bad. But, alas, sounds as if you are just using him as an excuse to keep consuming trace gluten. ~ Takala

Far from it. I have gone to extreme lengths to ensure I do not touch even trace elements of gluten including in my cosmetics, oral hygiene products (I personally write to manufacturers) and vitamins (i.e. multivits, B complex, B 6 & 12, calcium and magnesium, as you suggest. I take all those along with fat soluble vits that celiacs find difficult to digest). I have no desire whatsoever to consume gluten but it is an extremely difficult job convincing friends who insist on inviting us for meals about cross-contamination and the consequences of accidents. It isn’t just my partner I’ve agreed to accept meals from, but a friend who persistenly invites me for a meal, insisting she will “be careful”. I’ve agreed because my celiac specialist consultant insists the occasional accident is no big deal and not to get paranoid about it, otherwise quality of life from the stress becomes more of an issue than the celiac disease itself. To an extent I tend to agree. Convincing friends/family of the importance of rigid adherence to a gluten free (and other) diet isn't easy. It’s easy enough for me to understand because I research celiac disease obsessively, but family and friends who have only just become aware of the disease take some convincing - you can't educate them overnight.

If you continue to consume gluten, as a celiac, you will never heal and never get better.

I haven’t consumed a trace of gluten in 8 months and am no better, even though all tests now show that my gut is normal again. I will take heed of advice here about other possible food allergies/intolerances (my consultant also suggested the issue may also be other food intollerences besides gluten) and follow an elimination diet at some point, after I have followed my consultant's advice and given the meds a fair trial.

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Boy do we ever have a similar story. I have been on a 8 month quest to define my illness after previously being perfectly well until august 9th, 2011, then got ill and have not right since. I think I have had virtually every conceivable test and have three docs daignose me with celiac disease including four biopsies and labs, one loacal, two a Mayo clinic and one at univ of michigan. I have had my gallbladder out in 12/2011, had MRI's, cat scans, impedance and PH probes and have no acid tests, had food allergies to casein but eliminating did not improve symptoms, had a pet scan looking for cancer, MRI of brain, c-spine and thoracic spine and innumerable studies looking for parasites, stool studies and pancreatic tests. Most recently after bring gluten free for 6months my biopsies are normal and all celiac labs are normal. yeah that is great...... but I feel terrible everyday!!!!! I have virtually constant epigastric pain, still frequent nausea, tremendous pain into my back and rib cage everyday requiring pain meds to be able to even function(and yes I suffered for 5 months without them and cannot take the pain anymore). I feel like I am drunk every morning when I wake for at least 4 hours and foggy headed with a shaky out of body feeling that then improves slightly in the afternoon. And despite being "normal" on my biopsies and labs, I am far from normal, as a matter of fact I am no better than when I started on august 9th. I was perfect before, no dairy problem, no gluten problem and am 41 y/o then overnight bang sick!!! I have no explanation nor do 7 different docs including rheumatologist, endocrinologist, infectious disease, PMR doc, and 3 gastroenterologists. I wish someone would indeed explain why symptoms persist despite being intestinally healed supposedly. Trust I have looked at virtually everything I can think of. I am so frustrated I could puke and tired of having my life stripped away by this bulls...! If anyone feels the same, please chime in

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I'm sorry things are so bad, TTNOGluten, despite being gluten-free for six months and now, like myself, finally having normal celiac biopsies.

Maybe you should also try the Specific Carbohydrate Diet (starch-free) diet, as advised above. I have now tried it for almost a week and for the first time in a couple of years have seen a marked improvement. To be certain it was this diet working rather than my new meds finally kicking in, I returned to eating starch again today and surprise, surprise, my symptoms have returned. I'll give it a few more days consuming starchy foods and if my symptoms cease again when I return to a starch-free diet that'll be enough to convince me that a starch-free diet is worth adopting, at least until my system is strong enough to tolerate starch again.

Skylark,

I have now increased my probiotics from 3 billion to a 30 billion and decided not to purchase the GAPS book as I’ve found a webpage which covers the GAPS diet here http://www.gaps.me/preview/?page_id=28

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I'm so glad to hear SCD might be working! I just really enjoyed reading the GAPS book. I found it a lot more interesting than I expected I wanted to be sure I understood the rationale for the diet. Plus it has recipes. :) If you have found enough SCD/GAPS lists and recipes online, that's fabulous!

You might find Joy's blog helpful. http://theliberatedkitchenpdx.com/blog/ She posts on the board as domesticactivist. I think she has info on the GAPS stages and some of the food lists.

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