Am I A Failure On This Diet?

[Guest gillian502]

I've been gluten-free since August of 03' with very few mistakes that I'm aware of. I've also been dairy free since Dec.03'. I still can't escape the lower abdominal swelling, achey stomach all the time, and very soft stool. I've questioned my GI doctor time and again about why I am not signifigantly better after all this time, and told him the only big improvements have been that I've gained my weight back and feel maybe just a little bit stronger. But I've also gained as many additional problems as I've lost since starting this diet. My stomach hurts more often, feels swollen inside, and I am hungry so often that it runs my life.

The doctor told me he cannot say for sure if my problems are caused by Celiac or maybe a secondary disease, and set me up for a colonoscopy which is coming soon. If I don't have another disease, he claims I am considered a "failure" on this diet, that failures are common, and at that point my only option is trying various drug therapy for my aches, pains, and swelling. Anyone have any ideas or stories like mine? Thanks in advance for all help!

[gf4life]

Hi Gillian,

I am so sorry to hear you are still having problems. I hope that the colonoscopy gives you some answers. I just wanted to say that I'm here for you to just chat if you want to e-mail me.

God bless,

Mariann

[wclemens]

Dear Gillian, oh my gosh, I have a hard time believing just how much money all these doctors are raking in, when they seem to lack even a simple knowledge of Celiac. My grandson's doctor told the baby's parents, in front of me, that Celiac is not genetic, and possibly the baby would "grow out of it." Good thing I tagged along, to keep the record straight.

Okay, I have had Celiac for 51 years, and I am appalled that any person would say that you can be a "failure" on this diet. I guess that M.D. degree just means that he or she can make "many dumb" statements. Good thing you are sharp enough to realize that something is wrong with this part of the medical establishment and get to this board quickly.

There are possibly other foods to which you are allergic, along with wheat, oats, barley, and rye. I am also allergic to ALL milk and dairy, anything containing casein or whey, egg whites, and yeast, along with maltodextrin or anything with the word "malt." You are such a trooper to stick with this diet even when you don't feel well. CONGRATULATIONS! It is obvious that you want good health, and that alone makes you a WINNER. You might want to try going to a simple diet of meat, vegetables, fruits, etc., then adding back one food at a time to see what is causing the problems. It may be several foods. Read labels diligently. Read about and know each and every item that is passing your lips. You will find the answer.

I applaud your dedication Gillian. Keep us posted on the changes that are occurring. Best wishes. Welda

[gf4life]

I am appalled that any person would say that you can be a "failure" on this diet. I guess that M.D. degree just means that he or she can make "many dumb" statements.

Welda, I agree with you. I had such high hopes for my children's new doctor, and then when their tests were messed up and they can't get in to see him until April, I e-mailed him to tell him I was having trouble keeping them ON gluten since they want to eat my gluten-free foods. He told me that it was impossible to have a child 100% gluten free, so just let them eat the gluten-free foods and he could still test them in April. Well I know enough to know even a reduced gluten diet will mess up most blood tests, especially since their last two tests have come back inconclusive! So I spent the money on the Enterolab tests. I should know by the end of this month if gluten is bothering them or not. And disagree that you can't keep a child 100% gluten-free. It is a challenge, sure, and accidents will happen, but the general diet is not really that hard. And my children have always taken a sack lunch to school. Most of their lunch is already gluten-free, it is just a matter of switching them to gluten-free bread, crackers and cereals. Thank God you were there for your grandson!

Gillian, You sure are a trooper to stick it out despite the doctors comments that you are a "failure" on the gluten-free diet. Your body is not failing you. It is telling you that something is wrong. But finding out what other foods might be making you sick can be extremely difficult. I agree with Welda, you need to go down to the most basic simle diet and then slowly add one food at a time back in, but it may be some fruits or veggies bothering you, or even a meat. So if you do take your diet down to the bare minimum and you are still ill, then it is probably one of those foods and I would try eliminating them one by one. Have they checked you to see if your intestines are showing any improvement? And are you still taking any of the meds. you were on before? How about food allergy testing? They can do a simple blood test to check for some of the most common food allergies. But it really sounds like you have another food intolerance. Since most of your symptoms are gastro symptoms. Do you have the symptoms everyday? If so, is there a food you eat daily that might be the trigger? Are you keeping a food diary and also a symptoms diary? You may want to get really detailed with it for a few weeks and see if their is any pattern that you may not have noticed. Well, I really am hoping you will start feeling a ton better, real soon. Sometimes the healing process can take a while though.

Gos bless,

Mariann

[JsBaby-G]

Gillian,

It takes some people longer to heal from going undiagnosed than others so I wouldn't give up on the diet just yet. I too cannot believe that your Dr said you can be considered a failure on this diet. What is he a doctor of??? I have never heard of that in my life. I have been on the diet for many years and sometimes there are little ways you may be ingesting gluten, keep a food diary of everything you and of your reactions maybe you can make a connection without the "help" of you Dr. I too find that my stomach is still very swollen, so I am doing just that, keeping a food diary. Hope that helps.

[Guest gillian502]

Thanks you all so much for your replies, and for your compliments about my staying on the diet! It feels good to know that others know how difficult this really is, especially since the rewards of the diet have been few for me. I've had more stomach problems on the diet than before I ever began it, so it's been a struggle to stick with it, but I am.

I feel a bit better now since having my second floroscopy exam yesterday. The doctor told me all looked normal, and that although I was extremely ill at the time of my diagnosis last year and my biopsy showed marked damage to the intestine, that I am now not showing anything that cannot be reversed. That was a relief! He also said there are no signs indicating I shouldn't be perfectly able to absorb my foods. That was the news I needed to hear.

I also don't understand why my doctor calls me a "failure", but he insists they exist. (But this is the same doctor who told me to just go off the diet and deal with the diarrhea if it bothered me so much, and that this is not a diet I'd have to stay for the rest of my life.) Can you believe that? I've tried switching doctors but I'm particular about doctors and so far haven't found one I really like, but I'll keep looking!

I agree I may have other intolerances that have only recently become apparent. I'm seeing an allergist next week...this is all too weird, though! I've never had stomach problems or allergies in my whole life, and now, after going gluten-free at age 30, my stomach and abdomen are in distress! (Though at the time of diagnosis, I was having watery stools regularly and had suddenly lost 20 lbs.) My symptoms leading up to this were neurological in nature, as well as having an abnormal heart rate. And, no one else in my family has tested positive for this disease, so that's strange to me, too.

Thanks for listening and for the advice!

[Kathinsearch]

Gillian, if you can, try to have your Celiac IgA EMA and IgG tTg tests redone before you go through all that! This will help you know how well you are doing on the diet and if negative, will provideassurance of compliance with the diet. These lab tests are always done before other tests and such. Have you had them done in the recent past 2 months?

I don't how ill you were before you went gluten-free but some peoples intestines take longer to fully repair than than others depending upon the extent of damage.

It takes 6 months for your intestines to fully heal once you are on a strict diet... you could have ingested gluten inadvertantly sometime since or you could be still healing and adjusting to digesting foods.

I hope it all goes well and that you have periodic blood work done to help you monitor how well you are doing in self-treating with this complicated, but needed diet.

~~Kathy

Hancock, MD

[Guest gillian502]

My bloodwork was repeated again last week, actually twice, so I could get 2 different laboratory perspectives on it! I should get results soon. I had it repeated it once since the diet a few months ago, and was still in the positive range for the disease. Now, after 6 months totally gluten-free, I'm hoping all signs of the disease are gone, so I'll know this diet is helping me. I gained weight right away after going gluten-free, but in return got a whole host of additional symptoms. I've never heard of that happening before, lucky me, I seem to be the unusal case!

[Kathinsearch]

Hi, thanks for the reply. If your positive blood tests of a few months ago were in the positive range, were the total's significantly lower than the original test results, or about the same or higher? It is important to compare them to see if progress is occuring.

I ask because they should have been lower if indeed your diet had been 100% gluten-free.

That is a good thing that your doctor is on top of this and you have been tested again ( & by different labs). These figures should be significantly lower than than second set, or at best, negative if you are not ingesting gluten. Let us know what the result are and what the doctor suggests, next.

I would advise you ( and all other new Celiacs) to never rely on verbal information from other patients on what foods are gluten-free & not. Educate yourselves constantly on food ingredient terminology and go to the manufacturers directly for verification. Many people on these boards and lists have a bad habit of relying on after-the-fact symptoms to determine if an error occured in what they have eaten. This is not a valid way to treat our disease. There is much confusion and drama attached to this diet for some and it spreads like wild fire to the uninformed. When in doubt, don't eat it. And always keep in mind that we are so blessed to have a treatment that cures, complicated as it can be. If you need to, have a dietician help you plan your meals and keep a log of all that you have eaten if the tests come out positive again so you can isolate the impostor food and get rid of it in your diet.

I say this from personal experience. I have had many complications from not being diagnosed for many years and after diagnosis in following the advises of others on what to eat without verifying it for myself. After my diagnosis in 1986, I thought I was gluten-free for many years, following lists and newsletters that were not always up-to-date. I am paying the price for that and you will too.

It takes personal persistence to get this diet right and keep it right. I can see that you are motivated. Good for you! But beware of false statements about foods being ok to eat when they are not or are no longer ok to eat. Educate yourself everyday on the diet if you can because it is too easy to slip and err. We've all made mistakes and I am happy that this forum is here to help each other to help stay on the right path to good health. Keep in contact here, ok? ~kathy

You wrote:

My bloodwork was repeated again last week, actually twice, so I could get 2 different laboratory perspectives on it! I should get results soon. I had it repeated it once since the diet a few months ago, and was still in the positive range for the disease. Now, after 6 months totally gluten-free, I'm hoping all signs of the disease are gone, so I'll know this diet is helping me. I gained weight right away after going gluten-free, but in return got a whole host of additional symptoms. I've never heard of that happening before, lucky me, I seem to be the unusal case!

[DLayman]

Actually Gillian there are 'failures' on this diet.. not my choice of words.. he indicated that you are failing.. but in fact it is the diet that is failing you.. There are a few celiacs that do not respond completely to the gluten-free diet and they need to go further...

My advice for you is to check out the specific carbohydrate diet. It is the original diet created for celiac patients by the first main researchers of the disease.

There are a few places you can get good information on line.

www.breakingtheviciouscycle.info www.pecanbread.com and www.scdrecipe.com

These are the main three places to get information. on the btvc website there are a few chapters of the book by the same name.. the main chapters that give you the basics. Our local librarian was diagnosed as celiac about two months ago, she also is still having trouble .. and was planning on going it another month on gluten-free and then switching to the scd diet. So you are not alone in this. There are just a few tough cases out there and you happen to be one of them..

and kick your doctor in the shins for making YOU feel like a failure.. he had a really bad choice of words there.. it is the diet that is failing you.. and that also doesn't mean that you can it all and 'deal with it' really BAD advice.. does he want you to get osteoporosis? Calcification of the brain.. joint pain.. and all that other bad stuff that comes along with untreated celiac.. he's a jerk!!! I don't say that much so you know I am really grouchy about this one..

check it out!! email me if you have questions.

Denise

[Guest gillian502]

Thanks again for the great advice and replies! My bloodwork,taken 3 months ago, was a little lower than my original blood work back when I was first diagnosed, but still in the positive range for the disease. I am still awaiting results from a recent Celiac panel which will show if I am signifigantly improving after 6 months on this diet.

I was allergy tested today for dust, mold, and every food allergy imaginable, and all were totally negative. It's odd not being allergic to wheat even though I'm a Celiac! So now I know I have no food allergies going on, which leaves basically only 2 possible reasons for my ongoing symptoms: a secondary disease that may show up during my colonoscopy, or this diet is making me sick. I can't imagine what else would be making me ill unless this diagnosis was incorrect all along. Does anyone know if there are false positives for celiac disease or if the villi can be damaged in a way that appears to be celiac disease but is in fact a different disease?

I appreciate the web site listings, too, I'll look into those!

[Kathinsearch]

Hi... here are some articles on the diet, endoscopy & biopsy problematics .

There are some diseases that have similar biopsy evidence but all seem to be worse to have than Celiac Disease.....so let's pray for your recovery. And like I said, beware of misinformation about the diet...... I've been on gluten-free diet since 1986 and I have an extensive education in it and have never heard about there being an original diet or any subsequent standard guideline-recommended diet.

I suggest you contact the CSA and see if you can get a copy of their Handbook which includes a historical perspective on impoprtant conceptual & diet recommendation contributions that resulted in the current understanding and treatment of Celiac Sprue Disease

Here is a good article from some of the top experts in celiac disease:

1)

All that scallops is not celiac disease.

Shah VH, Rotterdam H, Kotler DP, Fasano A, Green PH.

Department of Surgical Pathology, Columbia University College of Physicians and Surgeons, New York, NY 10032, USA.

BACKGROUND: Scalloping of duodenal folds as well as a mosaic mucosal pattern, decreased folds, and increased vascularity are markers of duodenal mucosal injury, the most common cause being celiac disease. We have recognized scalloping in patients with a variety of conditions other than celiac disease. METHODS: Clinical, endoscopic and histologic data were reviewed from selected patients with endoscopically visualized scalloped folds along with testing for endomysial antibodies. Biopsy specimens were examined histologically for villous:crypt ratio, intraepithelial lymphocytes, and inflammation. RESULTS: Thirteen patients with scalloped folds underwent endoscopy for the following reasons: family history of celiac disease and osteoporosis, gastrointestinal bleeding, dyspepsia (2), B(12)/ folate deficiency (4), and diarrhea (8). Histologic examination was abnormal in all but 1 patient. Villous atrophy or flattening as evidenced by reduced villous:crypt ratio was seen in 11 of 13 patients. Other abnormalities were edematous or broadened villi (10), intraepithelial lymphocytosis (7), and infiltration of lamina propria (6). An infectious organism was identified in 6 patients (46%). Celiac disease was excluded by the lack of specific biopsy findings combined with endomysial antibody testing. Final diagnoses were normal (1), eosinophilic enteritis (1), giardiasis (1), tropical sprue (4), human immunodeficiency virus-related diseases (6) including human immunodeficiency virus enteropathy (1). CONCLUSION: We conclude that scalloping is not specific for celiac disease but rather a predictor of mucosal disease as evidenced by villous atrophy, widening, and edema.

PMID: 10840307 [PubMed - indexed for MEDLINE]

~~~~~~~~~~~~~~

Can see actual abstract at:

Open Original Shared Link?

cmd=Retrieve&db=PubMed&list_uids=10840307&dopt=Abstract

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here is yet another expert written article about what to do when the patient is truely not responding to the diet and celiac disease is the correct diagnosis

2)

Etiology of nonresponsive celiac disease: results of a systematic approach.

Abdulkarim AS, Burgart LJ, See J, Murray JA.

Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota, USA.

OBJECTIVES: Nonresponse or relapse of symptoms is common in patients with celiac disease treated with gluten free diet. Refractory sprue (RS) is defined as initial or subsequent failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy. The aims of this study were: 1) to identify causes of persistent symptoms in patients referred with presumed diagnosis of nonresponsive celiac disease (NCD); and 2) to characterize patients with true RS. METHODS: Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed. RESULTS: A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue. CONCLUSIONS: Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.

PMID: 12190170 [PubMed - indexed for MEDLINE]

Open Original Shared Link

[VAGuy]

Hello gillian - I don't know iif this will help but it might.

I've been trying to go gluten-free since about Thanksgiving, and I think I've only blundered a couple times, but I'm still having lots of trouble; this is what I've found.

Sugars - I think all kinds - cannot have them at breakfast or between meals, it

seems only with dinner OK

jello for a snack if I skip lunch kills me

Smucker's Bluebery syrup on gluten-free pancakes is bad (1 1/2 to 2 tsp)

Jelly beans at night - bad

juices/sodas other than with dinner don't work, careful with citrus

raw apples are deadly

what works - 1/2 to 2/3 banana with dinner, a little crushed pineapple or

mandarin oranges, 1/3 c Musselmann's applesauce, a few choc

chip cookies (gluten-free Pantry brand/no fiber - are good) with dinner, a

little sherbet with dinner, 2 to 3 tsp Carnation Instant Breakfast w/

soy milk @ dinner

Fat - very lean bacon or ham in AM seems to work, but sausage,

even Jimmy Dean 50 percent reduced fat seems to bother

Fiber - I have had to just about eliminate it. A few MI Del gluten-free cookies bother, I

can't eat gluten-free breads with fiber or guar gum, skinned veggies and fruits

(grapes, even sauted green pepper, craisins, fruit bits) are bad. Also on

my delete list - lettuce, coleslaw, raw celery, raw carrots, coarse grind

pepper

Those are the stumbling blocks I'm finding, might work similarly for you.

I've had an Entero Lab Kit for three weeks and am hoping I can finally send it back this Wed or next week if I stick to this plan.

Hope this helps, it is very dull but is working. From my dietician I got a long list of foods and their fiber content, it's good for fruits and veg.