Giving Up On Celiac Diet

[EJR]

I have been following a gluten free diet for almost 2 years now. In that time I have eaten at the maximum

6 pieces of toast and 1 serving of spaghetti. In the last 6 months we have been very cautious of cross contamination

as well. I have been dairy, egg, and soy free for 4 years. Also follow a somewhat mold restricted diet due to allergy testing.

I had testing done by Enterolab in September of this year. It showed elevated Fecal Antigliadin IgA :20 Units.

Fecal Tissue Transglutaminase IgA was normal. I have one Celiac gene (DQ8) and 1 gluten sensitivity gene.

Biopsy done after being gluten free for 3 months was negative.

During these 2 years I have not improved. The dreadful pressure and bloating (?) in my lower bowel and the colon / rectal spasms are a daily occurrence. They are so strong that I am unable to sleep most nights without some kind of painkiller. I have had a colonoscopy & endoscopy which were normal. Most of this abdominal / rectal pain started after

having gall bladder surgery in December 2007. I started the gluten free diet at about the same time.

Because I am not improving and I feel that I do not have definitive proof of gluten sensitivity, I have decided to re-introduce gluten and see if I feel any better (and hopefully not worse). Perhaps this is foolish but I seem to have tried everything else to no avail including reverse osmosis water, digestive enzymes, probiotics, and so on. My list of food intolerances is extremely long and therefore my regular diet is very, very limited. After 1 1/2 years of diarrhea following the gall bladder surgery the problem turned to constipation with increased rectal / colon spasms and abdominal pain. Increased fibre (psyllium and such) leaves me feeling like I have eaten crushed glass. To say the least I am very frustrated.

So here goes. 1 cup of spaghetti and 2 small pieces of toast today. And I get to not have so many potatoes and so much chicken. Yahoo!!!! We'll see what I'm saying tonight. I can't eat rice (way too constipating). By the way I have lost 50 pounds during these two years and I didn't really need to loose weight. I'm now 118 lbs (5'7"). I am 63 years old.

Thanks for listening,

Joyce

[mamaw]

Joyce

Sorry you are having a hard time of it .....being gluten-free for two years may not be enough time to heal an issue that may have been going on for many years....Yes, there are a few who find satisfaction in a few weeks but that is not the norm. It can take years for some to find health after years of damage,it can be VERY discouraging. We all want instant health when we find out what our problems are.Some people in five years are still not healed in the gut...

I too have 1 celiac gene & 1 intolerant gene.

Since you were gluten-free for 3 months prior to a biospy that may hav ebeen enough for you to improve your villi....plus the docs usually do three biospies but they could have missed where damage is occurring...

Honestly I can't see going back on wheat & gluten will make you better.

Here is another thought : have you been tested for Lyme Disease?I'm not an authority on Lyme but it can mimic celiac....just a thought to consider..

Sorry I can't offer any other help but I hope you find your answers to better health.

blessings

mamaw

[Jestgar]

I hope you find some answers. Let us know how things are going for you.

[mrsscary]

If I were you I wouldn't risk it. Being on a gluten-free diet for a long time and then going back on wheat can make you really sick. Instead, have a complete allergy screening. You could be eating something that you are allergic to and not even know it.

[cyberprof]

I too am sorry you're having a hard time. I'm with Mamaw, though, I don't think you've given enough time and/or strictness. I've been gluten-free for over two years but have not had any toast or wheat on purpose and am very strict. Based on what you said, you've had toast x6 / 18 months or so. That's some every three months. Some folks have reported that it takes them months to get over small, accidental glutenings, so I think it's possible that you've never recovered. Even the last six months (if you were truly gluten free) is not enough to heal, except maybe in children. And your enterolab results bear that out.

I don't know what going back on will accomplish but I wish you good health. I hope the above doesn't sound judgmental or mean, because I certainly don't mean it that way but there's no other way for me to look at your situation.

[ksymonds84]

I've been in your shoes Joyce, which is why I am a big advocate for doing all the testing possible while still eating gluten so that you will never doubt it in the future. Some can self diagnose and never look back, I am not one of those. I did the gluten challenge after being gluten free 1 1/2 years. I could only do it for about a month in a half because the symptoms became unbearable. At first I was okay, but I did take imodium every morning. I will be different and say since you want to try this go ahead and see if you can challenge for 3 months (but stop if you get miserable and that may possibly give you the answer you need) and do the panel again and possibly the endoscopy if blood panel is negative since you are looking for concrete answers. I agree that healing can take awhile but after 2 years you should be seeing SOME improvement so perhaps something else is going on. When I used to frequent the ibs.org board, I noticed that people who have had their gall bladders out seemed to keep having issues. You may be gluten intolerant and have the ibs issues because of the gall bladder surgery?

Many people at my local celiac chapter believe in Dr. Fines testing (wish he would publish) and with the DQ8 I would guess that you do have some problems with gluten so this is a good thing that you are testing it out for your piece of mind. Please keep us posted, I would like to know how your challenge is going for you!

[EJR]

Would like to thank all of you for your replies. I'm not sure how long I'll be able to continue this gluten challenge. Like I mentioned before I have a tremendous amount of lower bowel / abdominal / rectal pain everyday so it is kind of hard to tell what is happening anymore. A few years ago I would know within 20 minutes or so if I had eaten something that didn't agree with me (I would loose it very quickly with explosive diarrhea and then a sore gut for quite a few hours afterwards). I had a lot of pain after my BM this morning although this isn't unusual. The degree of pain is pretty high today though and now I do feel sort of like vomitting (this is not a regular symptom). Today I just ate the toast and no spaghetti.

I got a call from my doctor's office today. She did some blood tests last week and apparently something is out of whack. I have to go in to see her on Wednesday so will know more then. I know that she tested for Vit B12 deficiency and also for thyroid problems. I am aware that problems in either of these areas can be related to Celiac disease. I just hope and pray that perhaps we will at least be getting some sort of clue to what is really going on.

Blessings of the season to everyone and thank you so much for your replies.

Joyce

[lonewolf]

Have you tried the Specific Carbohydrate Diet? It works for a lot of people who didn't get relief from gluten free or other restricted diets. It's a bit harder, but it can be very helpful.

[Jean'sBrainonGluten]

Constipation is almost a separate issue for me. Whether or not I eat gluten I have to take several steps to deal with the constipation or I'm in agony. Every day I try to drink plain ginger tea, eat plain live yogurt, and do some abdominal exercises called Pilates mat. Those things plus drinking plenty of water are essential or I'm inbig trouble. I get the Traditional Medicinals Ginger tea and Straus yogurt. Hope this is helpful.

[cyberprof]

Have you tried the Specific Carbohydrate Diet? It works for a lot of people who didn't get relief from gluten free or other restricted diets. It's a bit harder, but it can be very helpful.

I was going to suggest this to, although I personally have not tried it.

I wanted to mention that when I was diagnosed I had tons of pain daily. Went through about $5,000 worth of tests. The pain slowly went away and what I realized later was that I was still geting gluten (through errors and lack of knowledge) and when I cut out all potential sources plus dairy and ate small meals (no raw veggies or fruits) the pain slowly went away. But it was not an overnight thing.

Joyce, I hope you get some answers soon. Have your doc considered colitis or Crohns?

[Imanistj]

What are gluten intolerance genes?

[EJR]

I was going to suggest this to, although I personally have not tried it.

I wanted to mention that when I was diagnosed I had tons of pain daily. Went through about $5,000 worth of tests. The pain slowly went away and what I realized later was that I was still geting gluten (through errors and lack of knowledge) and when I cut out all potential sources plus dairy and ate small meals (no raw veggies or fruits) the pain slowly went away. But it was not an overnight thing.

Joyce, I hope you get some answers soon. Have your doc considered colitis or Crohns?

Yes, I have been tested for Crohns and colitis (colonoscopy and CT scan). I don't think I can eat anymore gluten. Pain was really ramped up yesterday and the urge to vomit was very strong (and this is not a regular symptom). Today I have no desire whatsoever to eat gluten. Feel like 'tossing my cookies' just thinking about it.

Regarding the Specific Carbohydrate Diet I have researched it a number of times but do not have Elaine's book. I usually give up after looking at the allowed foods. The homemade yogurt seems to be very important to the diet (I cannot tolerate dairy in any form). Plus yogurt prepared over 24 hours will be very acidic (another major no, no, for me). I can't eat eggs, beef or pork or nuts. Quinoa, rice and corn have all been tried and have gone by the wayside. It looks like there would be very little left for me to eat on the SCD. I presently eat regular potatoes and sweet potatoes on a regular basis (they are not allowed on the SCD). The rest of my almost tolerable foods include salmon, chicken breast, avacado, grapes, canned pears, green beans, carrots & canned mandarin oranges, clarified butter. That's about it! I have tried over the last two years slowly introducing new foods but they have been a failure in most cases. The sweet potatoes were just started about a month ago and seem to be tolerable. I take a Folate/VitB12 supplement. Other than that I am stumped. Am I misunderstanding something about the SCD diet??

Joyce

[EJR]

What are gluten intolerance genes?

Regarding your question about the gluten sensitivity gene this is a diagnosis which is made by Enterolab. They consider certain genes to indicate gluten sensitivity. Dr. Fine's work (Enterolab) has not yet been peer reviewed. It seems that most doctors still question the legitimacy of the gluten sensitivity gene theory. The actual gene testing is done by the American Red Cross for Enterolab but it is my understanding that Dr. Fine does the interpretation of the results. He certainly has excellent qualifications and credentials so perhaps he will be proven correct. My understanding from speaking to Phyllis recently is that Dr. Fine has submitted his testing procedures for peer review (done this summer). This my understanding. Perhaps other know more than I do.

Joyce

[EJR]

If I were you I wouldn't risk it. Being on a gluten-free diet for a long time and then going back on wheat can make you really sick. Instead, have a complete allergy screening. You could be eating something that you are allergic to and not even know it.

Do you think that the symptoms that you continue to suffer from are from the Celiac disease or are they more related to Ulcerative Colitis? I'm sure that I read on another of your posts that you also have this unfortunate condition as well as Celiac disease. Would you mind sharing the kind of symptoms you are still having? I also read on your other post that you have been gluten free for 6 years.

Joyce

[Jean'sBrainonGluten]

I still want to urge you to consider that you have some kind of bowel blockage or ineffective muscular activity for clearance. Here is a site that gives the symptoms.

Open Original Shared Link

I have had nearly all the symptoms plus chills and basically the only way I avoid them is to do the daily acidophilus (try pills if you are lactose intolerant), ginger tea, and Pilates. I forgot to mentions as well that I take nearly 4 grams a day of Magnesium Malate. Since you sound so impacted you might need to take a stool softener like dulcolax to feel better.

Don't read the following if bowel stuff grosses you out.

What happens to me is that I'm slow for too long I get more and more stuff piling up inside and drying out so it can't be moved by my muscles by themselves. The only thing that has worked is lots of milk of magnesia, dulcolax and even ex lax to deal with the immediate crisis. The thing is that these are strong meds so you should start out with small doses and drink plenty of water. The times I've had crises it has taken a few hours and more than a few doses of these things to get results. After the crisis is over you may be like me and need the above stuff. I discovered that part of why eating gluten worked for me was that it gave me diarrhea and kept the blockage from getting so severe.

Sorry to be so graphic but this is actually pretty dangerous if you let it go too long. Hope you feel better soon.

[EJR]

I still want to urge you to consider that you have some kind of bowel blockage or ineffective muscular activity for clearance. Here is a site that gives the symptoms.

Open Original Shared Link

I have had nearly all the symptoms plus chills and basically the only way I avoid them is to do the daily acidophilus (try pills if you are lactose intolerant), ginger tea, and Pilates. I forgot to mentions as well that I take nearly 4 grams a day of Magnesium Malate. Since you sound so impacted you might need to take a stool softener like dulcolax to feel better.

Don't read the following if bowel stuff grosses you out.

What happens to me is that I'm slow for too long I get more and more stuff piling up inside and drying out so it can't be moved by my muscles by themselves. The only thing that has worked is lots of milk of magnesia, dulcolax and even ex lax to deal with the immediate crisis. The thing is that these are strong meds so you should start out with small doses and drink plenty of water. The times I've had crises it has taken a few hours and more than a few doses of these things to get results. After the crisis is over you may be like me and need the above stuff. I discovered that part of why eating gluten worked for me was that it gave me diarrhea and kept the blockage from getting so severe.

Sorry to be so graphic but this is actually pretty dangerous if you let it go too long. Hope you feel better soon.

Hi Jean,

Thank you for your ongoing concern. My gluten challenge did get my bowels moving very nicely. Prior to going gluten free I had daily diarrhea. In April of this year that changed to constipation. Unfortunately I had pretty severe nausea on the second day of my gluten challenge. By the third day I really didn't feel like eating anymore of it.

I received the results of some bloodwork done the day after my initial gluten challenge. It showed elevated liver enzymes (these do not normally show up in my bloodwork). So this has me curious. I'm going to go back in about two weeks and asked to be restested (I'll avoid gluten like the plaque during this time period) to see if the liver enzymes have gone back to normal.

Thanks again,

Joyce

[Nancym]

Regarding the Specific Carbohydrate Diet I have researched it a number of times but do not have Elaine's book. I usually give up after looking at the allowed foods. The homemade yogurt seems to be very important to the diet (I cannot tolerate dairy in any form). Plus yogurt prepared over 24 hours will be very acidic (another major no, no, for me). I can't eat eggs, beef or pork or nuts. Quinoa, rice and corn have all been tried and have gone by the wayside. It looks like there would be very little left for me to eat on the SCD. I presently eat regular potatoes and sweet potatoes on a regular basis (they are not allowed on the SCD). The rest of my almost tolerable foods include salmon, chicken breast, avacado, grapes, canned pears, green beans, carrots & canned mandarin oranges, clarified butter. That's about it! I have tried over the last two years slowly introducing new foods but they have been a failure in most cases. The sweet potatoes were just started about a month ago and seem to be tolerable. I take a Folate/VitB12 supplement. Other than that I am stumped. Am I misunderstanding something about the SCD diet??

Joyce

Just FYI, the dairy components of the diet are often omitted. I started out on SCD, but without the dairy, and then realized it was virtually the same as a "paleo diet" but with a lot more fussing over food. So I switched to paleo. I've since found there's things other than dairy and gluten that cause me issues. It seems like foods like nuts and seeds do as well. I can eat small amounts of them, but if I over do it I have some pretty severe intestinal issues.

It is a bit of trial and error and it takes a good positive mental outlook to make a lot of dietary changes, but lots of people do it successfully.

I hope you figure out what helps you!