Are only Celiacs gluten sensitive?

[Arosebud]

I am a newbie to this site. For the past five years I have followed the GF diet because it practically eliminated the Big D which attacked me in 2001. Nothing else helped. I did this without any doctor recommending it. I did have blood tests for Celiac which were normal, except for IGG? of 78 which I was told meant nothing. Last December I met with a Mayo Gastro who did a colonoscopy with biopsies and declared I was the poster child for MC/LC. He also did blood tests for Celiac and told me to abandon the difficult GF diet and eat normally. It has been six months and I have had bad heartburn, but no D on a daily basis. I also have gained 13 pounds! His response to my heartburn was that I have reflux, and it is very treatable, and go on eating gluten. Now.....if I don't have Celiac, could gluten still bother me, hence the constant heartburn? Doctors seem to be very black and white with no grey areas, and I feel like I am in a very grey area, health-wise. I am a virus magnet with achy joints, and not much pep. Advice?

[celia]

Sylvia!

You've come to the right place. This is such a terrific, warm-hearted group of people who are in the know when it comes to MC and gluten sensitivity.

The experience of people in this forum is the opposite of what your doctor claims. Like you, many people have eliminated D. and their other symptoms by cutting out gluten and other food intolerances from their diet. You will hear much more about it over the next few days.

I just wanted to post a quick welcome, and tell you how glad I am that you have joined us.

All the best,
Celia

P. S. I love your user name!

[Polly]

Hi, Arosebud and !

So glad you found us! Your story is typical of what many of us have experienced, unfortunately. Especially the part about doctors who don't understand about gluten sensitivity. I am a physician myself (a pediatrician), but I am here because I have MC. Have you found Dr. Ken Fine on the internet? If not, check out:

www.finerhealth.com

Dr. Fine is doing the research on MC that has found the link to gluten sensitivity. However, this most recent research has not yet been published, so that the practicing GIs are not aware of the connection.

I also had a negative celiac (traditional) blood test, but with Dr. Fine's stool test found that I have antibodies to gluten. Dr. Fine's test is more sensitive - it finds the gluten antibodies in the stool......long before they damage the gut enough to seep into the blood and make the blood test positive.

I have been gluten free now for 4 years (I also discovered other foods to which I was intolerant and had to eliminate) and feel wonderful. I take no medications and have no aches or pains or fatigue.

Is your doc treating the heartburn? If you have been prescribed proton-pump inhibitors, like Prilosec, please be aware that these are known to cause MC/make it worse. We have found here that some with MC seem to have inflammation in other parts of the GI tract, too - stomach, esophagus, etc. Reflux is very common.

A question for you......when you avoided gluten, did you have less aches/pains and more pep?

Gotta run, but am so happy to meet you. This is a wonderful family of MCers, who have so much advice and support to offer. If not for this group of folks, I am convinced I would still be sick. Looking forward to future chats......and please ask any questions you have.

Love,

Polly

P.S. I love the fact that you took charge of your own health initially and devised your own plan for treatment. This seems to be a necessary ingredient for "beating" MC - I predict you will learn more here than you will from your doc.
P.P.S. What kind of painting do you do?

[starfire]

Sylvia

So glad you found us but sorry you had look.

I'm sure you will get lots of good advice from the special people on this site. They are very helpful in so many ways.

Please feel welcome because you certainly are.

I have LC also, but am using meds to control it.

Love, Shirley

[Arosebud]

Thanks for all your warm welcomes. The years that I was GF I remember not having the constant heartburn. Actually, when I wasn't GF, I had it so bad I sat up in bed to sleep! It only took a couple days of GF to make a big difference. When I mentioned going GF again, the other half looked like grim death, as he knows the social struggle I went thru with people's questions, not being able to eat much at parties, etc. We just gave up on restaurants. Life is sooo much easier not being GF, but the bloat and heartburn are pushing me back to the GF way of life, I guess. The thing about this LC...I don't seem to be typical because I am not plagued by the D as so many seem to be....still...the doc said in my case there was no question, as they took 19 biopsies. Said the treatment was anywhere from nothing, to removing the entire colon. I am on no meds at all, except for the heartburn and he prescribed Prilosec which gives me neuropathy, but then other drugs have also done that, and I stopped using it. I am using Axid for the burn, with no noticeable side effects. Question is, am I doing myself harm eating gluten...also lactose is troubling and chocolate which I love, just kills me. I suspect chicken, as well. Husband thinks I am a head case. Someone wondered what I paint as a hobby...I do Norwegian Rosemaling (rose painting on wood items). I am retired for the past few years from a state job. Still trying to find a \"life\". Kids all flown from the nest and not close to where we live. Ramble ramble, thanks for listening, and great to be here.

[barbaranoela]

Sylvia~~~~~~

When I would go out to eat I would say to the waiters---I cant have such and such ---either sprinkled/marinated or whatever-----cus---my THROAT closes up and I will be rushing to the hospital!!!
They didnt understand anything else about our issues so I went for *below the belly* and scared the pants off them--
When I started to eat----the were on me---and I would give them the sign and they would *sigh* hahahaha!!

When people dont get it---then U do what U have to do!!!!

And my friends know me know----and ignore me--- ---

On many occassions I have packed my own goodies and enjoyed the day along with them!!!!

Ramble all ya want to------we understand--we support---

luve Barbara


PS. MCC here-----controlled---as long as I keep myself controlled and dont fool around---WHICH I do @ times-----

[harvest_table]

Hi Sylvia,

In answer to your question \\"Are Only Celiacs Gluten Sensitive?\\" the answer is NO.

It's a good thing now that at least you have a diagnosis of MC after all those years of not knowing what was wrong and it is extremely commendable you went forth with a GF diet on your own and found relief. It is a challenging diet-I had such doubts about being able to stick with it at first but it becomes second nature after awhile. The support of this group has helped me so much in my recovery.

It's so disapointing that a Mayo Gastro who claims you to be a poster child for MC would not have some (or just a little) knowledge of the gluten sensitivity relationship that many of us with MC have. My GI also insisted that I was not gluten sensitive because I tested negative for Celiac but I have been controling my symptoms with diet alone like many here. Some folks are using medication with success as well or a combination of diet/meds.

It's interesting that after eating gluten products now for 6 months you have not had problems with D but maybe not surprising. The muscle and joint pain and fatigue thats creeping up on you could likely be pre-curser
symptoms. These are common MC problems.

So I guess your considering whether you should go back to GF eating now? If you had good luck with it in the past it's likely it will improve your current problems. You might also drop a few of those pounds you put on!

Glad you found us Silvia. There is alot of information and support in this forum. Hope you make yourself at home.

Love,
Joanna
(Proud Minnesota Native)

[TXBrenda]

Hi Sylvia,

Welcome to this site. If you decide to go back to a GF diet, hang in there. I have found a few restaraunts that will work with you. Don't know where you live but I live in Amarillo, Tx. This town and the surrounding metropolitan area has less than 200,000 people. Not very many people have heard of MC, LC, or CC around here. Most people respect that I am on a restrictive diet without much fuss. In fact I have met a few celiacs as a result. I am so excited to discover a local store that sells GF mixes made up on site. They cater to folks with allergies so they know the importance of avoiding cross contamination. As soon as they obtain the health department's OK, they plan to start preparing items! I tell you all this to encourage you.

I just returned from a 1300 mile road trip this weekend. I had no problems other than falling coming out of a Dairy Queen. A couple of you on this board would understand why I was in such a place to begin with but I digress. I'm like Barbara as long as I stay on the straight and narrow, I'm OK. In the last week or so, I found out I probably have diverticulosis (sp?). My appointment with my GI is next week. If I do have it, I will increase my list of forbidden foods. I have been encouraged by Polly and others on this board that have many more food intolerances that I am positive that I can live with both illnesses.

I was diagnosed with LC three years ago. I am fortunate that I was diagnosed within a couple of months of starting the D symptons. Within a few days of starting the GF diet, I saw improvement in the D. After taking Asacal for a few months, my hair started falling out. Also, the D had returned. Haven't taken it since. My joint aches improved also with the diet. I always wondered why I felt better on a low carb diet.

This is a longer post than I intended to write, but I wanted to welcome you.

Take care,
Brenda

[tex]

Hi Sylvia,

Welcome to our discussion board. Your GI sounds a lot like mine did, six years ago, except that mine only wanted to remove half my colon, because sometimes that helps, (according to him). I thanked him kindly, and never went back.

Trust me, removal of your colon is not a practical treatment for MC, nor is it a recommended treatment. Statements such as that make it pretty obvious that your GI simply doesn't know how to treat MC.

It's true that celiac disease, (according to the classic definition), is a black or white situation. IOW, it's a black or white issue by default, simply because of the rigid way in which the medical profession chooses to diagnose and describe it. Gluten sensitivity, however, is a horse of another color. There are variious degrees of gluten sensitivity, ranging from slight to full-blown celiac disease.

Yes, the diet can be a real aggravation at times, especially when trying to eat out, but one learns to handle it. It's such a great feeling to get rid of all the issues that gluten causes for those who are gluten sensitive, that most of us who have found relief of our symptoms by way of the diet, wouldn't consider going back to the way we were. I would assume that those who have found relief by way of meds, would have the same attitude. Life is too short to be sick all the time.

Again, welcome to our group,
Wayne

[MaggieRedwings]

Welcome Sylvia,

Your story about your GI is a familiar one to us but you would thin that a Mayo Gastro would be just a bit more informed. My GI is great and feels that I have to do what is needed to keep by CC in check. I take no drugs since nothing worked for me and I am GF and a vegan so that makes it even harder. I have had CC since 4/2001 and found our old board when there were just a few of us - Sally, Polly, Barbara, Alice, etc. and they are now my very special family.

Ramble all you want and go back to GF - it does work. I am not the \"Poster Child\" for being in remission since I still have D on a daily basis but someday Norman will come to visit and stay.

Welcome Again, Maggie

[Alice]

Hi Sylvia,

And a big welcome! I'm one of the first members of this board and have had LC for 6 years. I've been gluten-free and in remission for almost 5 now . Used Dr. Fine's tests and was found to be gluten sensitive with intestinal damage.

When I went gluten-free the damage gradually healed. Most who have
MC risk intestinal damage from gluten if they continue to ingest it. This can lead to other complications. The fact that you felt much better when gluten free strongly suggests that you are sensitive to gluten and should avoid it.

Where in northern Mn. do you live? I'm another proud native of Mn., love the north country. Used to go to Lake Superior and the Arrowhead region alot as a child.

My best wishes for better health. Let us know your progress.

Alice

[celia]

Sylvia,

I have 'mild' LC and don't have D. either. I had loose stools in the morning for periods of time but never the D. that people talk about on this forum. My doctors says it's because my LC is patchy and not throughout the entire colon like people who have the explosive D.

I've been gluten free for almost a year, and a huge number of my symptoms have dissolved. However, I have multiple food intolerances (like casein, sugar, starchy food, fruit) so I had to give up more foods before I became relatively symtpom free.

Your symptoms could surely be related to gluten intolerance. I had an accidental 'glutening' two days ago (I injested gluten unknowingly) and the next morning my stomach was bloated, and still is today. That's a look and sensation I haven't had for a long time, so it's very noticeable!

Celiac disease is just one disease related to gluten intolerance. You can be gluten intolerant and never have celiac disease, but damage can be done to other organ and hormonal systems. My all time favorite book on the topic is Going Against the Grain by Melissa Diane Smith, which is about gluten intolerance as well as the problem, for some people, with whole grains as well. It's not a book focused on celiac disease, although that's mentioned too.

I took Dr. Fine's test (www.enterolab.com) and found out that I am gluten and casein intolerant (dairy protein). I was still eating dair in small amounts, so I was so happy to find out about that. I suggest taking Dr. Fine's test at least for the gluten sensitivity. Then you will have 'proof' for your husband! Some people have thought they are lactose insensitive but are actually casein insensitive, so you might want to check that out as well. There's a lot of good information on Dr. Fine's websites too.

So glad you have connected! All the best, Celia

[annie oakley]

Like Barbara I had to tell people I'd end up in the ER because as she said to talk about *D* people would rather cut off a finger than discuss that with you. But here we talk about everything. I started in 2001 with this disease, and have been in a remiisooion without meds since the middle of march. I was taking asacol.
It's a family here. to our Home. Hugs Oma

[JJ]

Hi Sylvia! Welcome...so glad you found this wonderful group! I take Entocort....3 pills x week and haven't gone GF because I'm lazy and for the social reasons you mentioned. I have been having a bit of a flare lately, I think because of stress. I'm hoping to get back on track soon. Anyway, again, welcome! Jill

[Lucy]

Hi there,

Unfortunately, I just lost a long response, so will have to make this quick.

We're sooo glad that you found your way here. I'm always amazed that people figure out their gluten sensitivity all by themselves.

I was a bit confused though -- am I to understand that you restarted on gluten after the recommendation of your GI?

I can fully appreciate the difficulties socially and otherwise of being GF, but I fear the consequences of not being, some of which are QUITE anti-social, and there are lots of complications that can make life unbearable.

I am one who was completely overwhelmed by the wonderful response I had to a whole bunch of symptoms with the removal of gluten. I just had to remove the others I stool tested positive for to not have some minor amounts of diarreal breakthroughs the next day after ingesting them.

Your real friends will be very supportive if they realize that you will leave out anything that you are not sure about in eating situations.

Often times people will offer to fix you something because they don't know where the more minute amounts can hide.
I simply tell them before they have time to attempt to fix something special just for me, that it took me months to learn where all the allergens are hidden, so I know that other people can't be expected to figure it out, so I prefer to just bring along a little something that I know I can eat. I've never had anyone insist after saying this.

As far as restaurants, sometimes if you call ahead and talk to the kitchen manager or the head chef, they can leave out the ingredients that you can't have, like marinades, for instance. Most restaurants nowadays, even fine ones, will pre-prepare or half-prepare their menu items, so that all they have to do is finish it off after the order is placed.

Also, when you arrive, you let this person know that you have arrived, and let him supervise the preparation and delivery of your food.

More and more restaurants nowadays are seeing the potential of business that's going to come with more and more celiacs being diagnosed in this country AND their families, friends, and business associates, and therefore, are beginning to offer a gluten free menu, even the single, individually owned local restaurants. I'll have to write about one here in another post soon.

If you have one available, you might also want to begin attending a local celiac group. They may not understand the connection between M.C. and gluten sensitivity any more than most GI's do, so I would just tell them that I was tested positive to gluten (well, you did when you eliminated it), and need support.

Celiacs are the nicest people in these groups, so you'll enjoy being able to eat at their meetings safely if they serve goodies like they do here at their meetings. It would also be good for your hubby to actually be around other people dealing with this as well, so hopefully, he can attend their meetings and social functions with you.

Also, I understand that Igloo now has a little personal size cooler. I'm thinking about getting one of those for when I have something where I have to bring my own food. Hey, maybe one in each color to complement different outfits. Soon they will be all the rage! Ha!

Seriously, if you are going gf, go gf all the way, rather than half-way. I think that would be harder due to the addictive nature of food allergens, and the related cravings for things the sensitive should avoid completely.

Ask away. We're here to help.
Yours, Luce