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ruthykins

If Gluten Free Works Why Be Diagnosed?

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Hi all,

If a gluten free diet works (gets rid of ALL symptoms), why do you need to be diagnosed? May seem like a silly question I know but there are so many people on here that say they feel better after removing gluten just for a couple of days. Would love to here all your thoughts :)

ruthykins ;)

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Celiac.com Sponsor (A8):

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Hi all,

If a gluten free diet works (gets rid of ALL symptoms), why do you need to be diagnosed? May seem like a silly question I know but there are so many people on here that say they feel better after removing gluten just for a couple of days. Would love to here all your thoughts :)

ruthykins ;)

Some people prefer to get a diagnosis simply because they want to be absolutely certain that it is celiac that they are dealing with. Another reason is that some schools wont profide gluten-free meals unless they have proof of an official diagnosis. Also in the UK you can get basic foods (bread pasta etc) free on perscription but you have to have an official diagnosis.

Another reason is that doctors would prefer to be sure and so they will try their best to get all the possible tests.. even though sometimes they scrap some of the results.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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I think for some... in fact, many, there is a question as to whether Celiac is the ONLY issue. And, as we all know... in many many cases, self diagnosis isn't a good thing. There are certainly some here who were forced to self diagnose due to various reasons. However, some folks really NEED that absolute, because it's the ONLY way they'll stick to the diet.

In the case of a small child, it's incredibly difficult to send a kid with gluten issues to school. Who wants to go through all the hassles for a "what if?"


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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It is a personal decision. You have to weigh the risks of going after a firm diagnosis with the benefits of going gluten-free. There are different ways of looking at it, to be sure, and from my perspective, I can't imagine wanting to poison myself for even one more day, just to get "official confirmation from tests that are less valid as diagnostic tools than a dietary response, anyway.

As long as celiac/gluten sensitivity is the ONLY issue, I vote for self-diagnosis. If there are other issues, that's a whole different ball game.

My 9-year-old does not have an "official" diagnosis, and he has been gluten-free for several months, and he is really, really good about it. He does not react severely to gluten, but it IS noticeable--major eczema as a first reaction, followed by tummyaches and loose stools if he continues eating gluten.

It's not a big deal at school or outings; he just brings his own treats, and if everyone is having pizza, I make him his own pizza to bring. He has not yet complained.

My own diagnosis is iffy, too (only the IgG was elevated, after 1 month gluten-free--1 doctor said it was celiac, another said I was fine), but I learned enough from the experienced ones on this board to realize that the only thing I would achieve by going after a firm diagnosis would be more damage--and I'd heard so much from the "old-timers" here who had irreversible damage from continued ingestion of gluten. I wasn't willing to risk that kind of damage.

I figure I am not giving up anything to stay on this diet except convenience. There are recipes and flours to make EVERYTHING, so what willpower do I really need?

Now, if I had to give up chocolate, that would be different! :rolleyes::lol:

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Now, if I had to give up chocolate, that would be different! :rolleyes::lol:

LOL!!! =)

FF, I'm glad to hear that your 9 year old isn't affected in school. Does he have any other intolerances or issues? I'm just curious, because I've had issues with my daughter in school, and she's only in half day kindergarten. Of course, she knows what she can/'t have, but she still often feels quite left out when kids have birthday treats that she can't have.

We thought we had this all figured out at the beginning of the year. While most of the parents have been really quite understanding, some have been downright pains about it. =(

Though, she has a ton of other allergies, including peanuts, eggs, dairy, soy, and the list goes on. Lunch time, in the cafeteria, scares me... even if I prepare her lunch for her.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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If you self diagnose,I think its still important to deal with issues like your increased cancer risk (adenoma carcinona, T-cell lymphoma) osteo, associated autoimmune disease, pancreatic insufficency...liver cancer...you know all the scary stuff that hopefully won't be a problem but somebody still needs to keep an eye on. :)


I don't eat gluten and neither do my cats

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From my perspective, get a diagnosis first if possible. I have biopsy diagnosis. I was extremely ill and the Drs had no idea what was wrong...other than it must be in your head...eerrrgggg!

Now that I know I have Celiacs, I knew the signs to look for with my kids. Still, when one child was having problems, the Drs would tell me that it is impossible for her to have CEliacs. Without doing a single test to rule anything out. Then when I would tell them I have Celiacs, most of them look at me in shock and say "how do you know you have it?" Followed by "What do you it?" Followed by my personal favorite, from the pediatric gastro "Do you want to subject her to that life sentence [of gluten-free diet]?!"

I have also found that having a diagnosis makes the family members who do not want to acknowledge that me or my kids have allergies or Celiacs, an official diagnosis ends the argument pretty fast.

All that being said, my youngest was tested and the result was she has one gene and the biopsy was "inconclusive". So we struggled to get her tested and the results were useless. After the tests were done, she was made gluten-free/CF and now she is doing great.

In my opinion, pursue testing to eliminate and rule out other disease and problems and to provide positive proof of the disease. I think I will need the positive proof for the kid in the years to come.

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There are different underlying conditions that can cause symptoms when gluten is consumed. Many diseases occur in clusters. For example you are more likely to have other allergies if you have one. From this perspective, knowing which of the underlying conditions you have will give you some information about what related conditions to be watching for.

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I wish I would have been diagnosed ... I was sick for probably 5 years - doctors told me I had period problems(symptoms seemed to increase during menstruation) and tested me for STD's like 10 different times. Still STD-free. And gave me many pregnancy tests. Still not a mother. Then they said that I had IBS and to eat more whole grains (for some reason I didn't purchase rice bread) etc. By the time someone suggested I had a gluten sensitivity/intolerance, I had no health insurance, and simply went gluten free for a month - TA DA. Here I am 3 years later and creating a gluten-free menu at the restaurant I work at (small business advantage).

When I get health insurance in June (upon marriage), do I want to consume gluten and go for tests? The thought scares me to death? Again, I wish I would have been diagnosed - it seems more official and believable, but I don't think I am willing to suffer (or make my husband suffer) being gluttoned.

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LOL!!! =)

FF, I'm glad to hear that your 9 year old isn't affected in school. Does he have any other intolerances or issues?

So far, no, he has no other intolerances or issues that we are aware of.

We are really, really lucky in that family and friends have been really terrific. Not one person has ever questioned the need for this diet, and it wasn't like I was deathly ill beforehand, either. All I had to say was that my previous annoying-but-mild symptoms that I had never complained about (thyroid, reflux, cramps, bloating, D, joint pain) either disappeared entirely or got much better after going off gluten, and that his eczema and 2-or-3-times-a-week tummy aches disappeared, and everyone said, wow that's great, whaddya know, gluten, huh? And his friends' moms call me to ask if they can feed him ______ (fill in the blank). One called to say they were ordering pizza, what could he have, so I threw some corn tortillas on the griddle, stuffed them with cheese, flipped them, and topped them with tomato sauce, more cheese, and Italian seasoning, and got them there before Pizza Man did.

I am always shocked to read how many people are literally harrassed by their families about the gluten-free diet. I guess there are a lot of horrible people in this world. :blink:

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Because ideally, you want to know definatively what's wrong with you. I mean a real medically accepted diagnosis. One that identifies Celiac Disease, and rules out all the other diseases you could have. Some other diseases are treated with medicines or possibly surgery. You want to know for certain that a gluten-free diet is what will "cure" you, and that no other treatment is needed. No guessing, no wondering if you did the right thing, or all the right things.

I'm not a doctor. I'm assuming you are not one either. If it was just for me, and I didn't have insurance, and couldn't afford the real medical tests, and couldn't get help doing it, then maybe I could justify self-diagnosing myself. But for my kids, no way. I'm not going to gamble, and force a gluten-free diet for life on them, unless I'm sure.

You also don't want people labeling you some kind of food wacko. There are plenty of those, and you don't want there to be any doubt about it, you are not a part of that.

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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I am struggling with this diagnosis thing myself. Anti-endyomisial blood test and intestinal biopsy were negative. Diet is doing wonders. But new food sensitivities have developed. And doctors are running a full autoimmune workup leaning toward possible rheumatoid arthritis. Somewhere I read on this forum that there may be a host of other conditions for which gluten intolerance is just a symptom...heavy metals, mold, and lyme disease were mentioned. Not one doctor has brought this up with me yet. I don't know where to look for more info on these issues. I wonder how many people self diagnosis by diet and just leave it as supposed celiac...this is so personally exhausting that I don't blame them for wanting to go living and stop all the tests...ok, I am feeling down about this right now. This doesn't help you...sorry! <_<

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I am self diagnosed and am very happy with the decision to go gluten-free. I am experiencing great relief from symptoms and do not find it difficult to stay strictly gluten-free. This forum and the articles on this website have made it pretty simple (list of good and bad ingredients, for example) -- after some initial difficulty and a few setbacks.

Having said that, however, I convinced my 81 year old mother to start eating gluten-free and now I really regret that and wish she had been tested first. She was having pain in her joints, sudden arthritis-like symptoms, and had a history of H. pylori (intestinal bacterial infection), episodes with rashes on and off that sounded like DH, and she also has monoclonal gammopathy (also linked by studies to gluten sensitivity). I got her to try a gluten-free diet, but it was only later that I realized if she wanted to get tested, and she probably should, she'll have to start eating gluten again for the tests to be meaningful. But if she does that, she might have a bad recurrence of symptoms, even though at this point, she desn't really feel much improvement in her joint pain -- and to the extent she's feeling slightly better, that might not have anything to do with her eliminating gluten. So: I wish I had advised her to get tested, especially since she gets bloodwork done every 6 months anyway for the monoclonal gammopathy. If she keeps up the diet, any tests she have will probably be negative.

My teenage daughter, too, has some symptoms that worry me -- iinfrequent menstral periods, gas, constipation, etc., and she tried eating gluten-free for a couple of days before she gave up. I'm actually relieved, because next time we go to the doctor, I want her to be tested. I don't want to subject her to either strict dieting unnecessarily, or the bad reaction to a gluten challenge if she should eat gluten-free and then decide to be tested later.

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Sometimes I wonder. Sometimes, it seems that those of us that do have an official diagnosis of celiac are just the ones who were lucky enough to find the right doctor, at the right time, or maybe just happened to have the doctor find the right spot at the right time during an endoscopy--just happens the odds were on their side at the time. There are so many false negatives in celiac disease. I think many of us are told we do not have celiac disease when we actually do, then we are sent away thinking, what now???? Like I have said before, I think we are the guinea pig generation--we are who they are learning from. It seems like more and more is coming out about celiac all the time. I just read the other day about gene testing.

http://www.sciencedaily.com/releases/2008/...80302150721.htm

ScienceDaily (Mar. 5, 2008)

Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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My teenage daughter, too, has some symptoms that worry me -- iinfrequent menstral periods, gas, constipation, etc., and she tried eating gluten-free for a couple of days before she gave up. I'm actually relieved, because next time we go to the doctor, I want her to be tested. I don't want to subject her to either strict dieting unnecessarily, or the bad reaction to a gluten challenge if she should eat gluten-free and then decide to be tested later.

Is there a link between lack of menstruation and gluten? (Not that I should be surprised.) I ask because I have a friend with many celiac symptoms (arthritis, tummy issues, brain fog, etc.) who is putting off testing/trying the diet because she just doesn't want to deal with it, and her daughter, who is 17, has never menstruated. They are vegetarians, with a diet heavily based on wheat.

If you have any links showing the relationship to gluten and lack of menstruation, that just might be enough to convince my friend... :ph34r:

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There is a definate link to infertility, lack of menstration and spontaneous abortion with women with celiac. For a long time they thought that nutritional deficiencies were the primary reason but they are now realising that more is at play than just that. There is a lot out of good articles out there, here are 3 to get you started. The first on may be of most importance as it deals with primary amenorrhea, which is what the young lady is experienceing. I hope this is helpful. Any bold is mine.

http://www.ncbi.nlm.nih.gov/pubmed/17583254

"BACKGROUND: Primary amenorrhea can be due to abnormal functioning of the hypothalamic-pituitary axis or malformation of m


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I am self-diagnosed and I am an RN... went in as I should, and they had no idea what the problem was and gave me some pills to help with the instestinal cramping. I went through the detection diet from foodintol.com - best $90 I spent in my life. I will not be glutening myself to get tested.

I agree with the earlier comment - right doctor, right place, right time. That did not happen for me.


Proud Mom of now 3 - one of which is dairy intolerant, and a hubby who is dairy intolerant.

Coconut, pseudoephedrine, lidocaine with epinephrine, sulfa and penicillin allergies for several years

Gluten, dairy and wheat intolerant since July 2007, soy intolerant since October 2008.

Be kind, for everyone you speak to is fighting their own battles.

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Here's a link on the issue of gluten and irregular menstruation/infertility: http://www.buzzle.com/articles/gluten-into...en-allergy.html

"Some of the other conditions associated with gluten allergy are irregular menstruation, infertility and miscarriage, as well as slow growth in infants and children."

I see that someone else here has sent you more and better links.

Good luck.

Ellen

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... and she also has monoclonal gammopathy (also linked by studies to gluten sensitivity).

Ellen, I read the above and almost jumped out of my chair! I've never seen or heard such a link. I did a google search and found lots of information.

My hubby has been diagnosed with monoclonal gammopathy (MGUS) but his now appears to be growing and may turn into multiple myeloma, a terrible fate. Given the odds at his age (48) he has a good chance of it going bad. I never would have thought to connect the two but reading the research I'm convinced.

My DH went "Paleo" based on his research after his MGUS diagnosis but he CHEATS with beer and occasional cookies and pizza and as we celiacs know, the only safe level of gluten is no gluten. To top it off, my son just got his gene test back and he has a celiac gene (DQ2) and a gluten-sensitive gene. I haven't had my genes tested but I was certain I had the celiac gene but now I'm not so sure. Hubby has some symptoms of celiac but won't consider giving up beer. Now I have to make him.

Sorry to ramble. Please PM me if you have any information that might help my hubby. Thanks!

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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My son had all the "classic" celiac symptoms. Failure to grow, distended abdomen, poor appetite, irritability, and foul smelling watery bowl movements three times a day that he could barely manage to control at age 3. We got the blood work done and his Ttg as very positive and he has responded fantastically to the diet. Every one of his symptoms disappeared quickly once he started the diet. I am very confident that he has celiac disease. False positives are extremely rare, and although positives may be associated with a few other disorders, like severe liver failure, I'm sure we've nailed it. (My healthy 4 year old does not seem to have a failing liver. ;) ) And after 8 months on the gluten free diet his Ttg is normal!!! If we had not started the diet prior to seeing the GI, I would have likely had the biopsy done, but at that point I was not willing to reverse the first positive change I'd seen in his health in years. I would gather as much evidence about your condition that time, money and your health will allow. That is different for everyone.


Jenny

Son 6 yrs old, Positive blood work, Outstanding dietary response, no biopsy.

Household mostly gluten free since 3/07

Me: HLA-DQ 02 & 0302 (DQ 08), which I ran & analyzed myself!Currently gluten lite, negative tTG, asymptomatic

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Cyberprof,

Sorry to hear about your hubby and how worried you feel. I don't have any information to offer about celiac and MGUS because I myself am a novice in this whole gluten-free world and I only found out about the studies about MGUS and gluten through something I read on this website this last week. However, if I learn anything more, I'll let you know.

The best you can do is show your husband the recent studies and stock up on gluten-free beer. I wish you the best.

Ellen

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Thankfully we were at the right place at the right time with the right Dr. when our DD was starting to have obvious symptoms. (the only other thing I noticed is that she didn't grow in 1 year in height or weight-but was in 95th percentile and dropped to ~85th, so we didn't think anything of it). We saw the Dr, had the blood test, results back within a week (positive), saw the GI emergently 3 days later and the biopsy done and confirmed immediately within another week. At the time I wasn't aware that we were VERY fortunate. Our son had a negative blood test when he turned 2, but in mid-January he started having horrible D, very acidic which was leaving blisters on his bum (TMI), he's always been small (10th %), always been picky eater, behavior issues (but not horrible), I took him off gluten (wish I hadn't) his symptoms improved rapidly and he turned into a different (pleasant) child. Put him back on before the GI appt, symptoms returned. Stayed on gluten full force until biopsy yesterday. There was an area of "possible scalloping and damage" that he wasn't wanting to diagnose off the images alone, so we are waiting for results on Monday--BUT, we went gluten-free for keeps yesterday morning! I needed the diagnosis to make sure there wasn't anything else going on with him.


Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)

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