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Is A Diagnosis Too Much To Ask For?


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#1 ANDOBEAR

 
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Posted 11 June 2008 - 02:01 PM

27yo female with a family history of celiac in aunt and grandmother (on same side of family).

I have had chronic diarrhea and general GI troubles like bloating, pain, reflux, constant belching, my whole life. I was diagnosed as bein lactose intolerant as an infant so I always associated my issues with lactose. Since my youngest son was born 18 months ago my GI issues have become far worse. Lactose intolerance was RULED OUT after a breath test. I have also had issues with anemia and iron defficiency my whole life. These issues have also worsened recently. My extreme iron defficeincy and worsening reflux symptoms prompted a gastroscopy. The gastroscopy confirmed GERD and gastritis. The biopsy showed increased intraepithelial lymphocytes at the villous tip, suggestive of ciliac. The pathologist noted that clinical correlation was necassary. Based upon that, the NP at my GI ordered a celiac plus panel for Prometheus. The test shows that I carry the genes for celiac but the serology was negative. (I have not seen these results myself so I can't comment on the specific numbers. A copy is being mailed to me.) I was sure the results would be positive, since after reading up on celiac I have several symptoms I never knew were associated with the disease....since having my son I have been treated by a rhumetologist for joint pain and swelling, a chiropractor forback pain and tingling of the limbs, my GP for a rash that gets itchy at night, a councelor for depression, a bariatric surgeon and nutritionist for a 60 pound post partum weigth gain, a hematologist for iron and vitamin deficiency (supplements are not working and weekly iron infusions are necessary), and of course a GI specialist for the afformentioned issues. So what the hell is wrong with me if its not celiac disease? I have read studies that say the results of my biopsy are reason enought to diagnose celiac. I told the NP at the GI I wanted more testing to get to the root of the issues. She now wants stool samples and a colonoscopy because I refuse to hear that I must live with these symptoms with no explanation. Does this sound like celiac disease or something else? She said I could try the GFD once we are through with testing even if I don't get a diagnosis. Well, I want a diagnosis damnit.....of something. I want an explanation.....is that too much?
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#2 ShayFL

 
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Posted 11 June 2008 - 03:31 PM

Hello and Welcome.

Not all of us get a "gold standard" diagnosis. But what many of us get is a positive response to the diet. If I were you, after all of the testing is done, I would go on a Gluten-free Casein-free diet and see for myself. What do you really have to lose? Symptoms.....
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#3 ANDOBEAR

 
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Posted 11 June 2008 - 03:39 PM

Hello and Welcome.

Not all of us get a "gold standard" diagnosis. But what many of us get is a positive response to the diet. If I were you, after all of the testing is done, I would go on a Gluten-free Casein-free diet and see for myself. What do you really have to lose? Symptoms.....

Yes, I suppose you are right. The reason I want a firm diagnosis is because I am having gastric bypass surgery done at the end on july. I want to be sure I am treating the right problems. I think I will give the diet a shot if nopthing else pops up as a possibility.
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#4 Ursa Major

 
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Posted 11 June 2008 - 04:59 PM

Yes, I suppose you are right. The reason I want a firm diagnosis is because I am having gastric bypass surgery done at the end on july. I want to be sure I am treating the right problems. I think I will give the diet a shot if nopthing else pops up as a possibility.



Do you realize that unexplained weight gain is also a symptom of celiac disease, not just weight loss? My naturopathic doctor told me that malnutrition can cause weight gain, and of course, celiac disease causes malnutrition.

You will shorten your life span with gastric bypass surgery. And it will inevitably cause MORE malnutrition!

It would be wise for you to try the gluten-free diet before going to such extreme (and irreversible) measures as gastric bypass surgery.

There are lots of people here who gained weight as a result of celiac disease, and who have lost quite a bit of weight after going gluten-free. The one thing that is necessary is to NOT replace gluten bread, cookies, cake etc. with the gluten-free versions, as those are even more fattening on the whole.

Have you tried a high protein, high fat, low carbohydrate diet (yes, high fat, as a diet high in saturated fat will help you lose weight, as fat is NOT what makes you gain)? You may be pleasantly surprised at how good you might feel on that kind of diet.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#5 Takala

 
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Posted 11 June 2008 - 06:31 PM

You have the genes.
You have the relatives.
You have the following symptoms which match being gluten intolerant:

bloating reflux GERD , diarrhea, anemia which does not respond to supplements,biopsy showing changes in villi, joint pain arthritis symtoms, ITCHY RASH, depression, weight abnormality.

Get the rash biopsied to see if it is DH and there's you're positive medical diagnosis. A stool sample and a colonoscopy are not going to do a thing to get you a diagnosis unless the stool sample was being tested for antibodies to wheat protein and somehow I doubt that is what they are intending.

A gastric bypass will solve absolutely none of your problems if you do have gluten intolerance (which eventually leads to full blown celiac) and it may kill you if you already have severe vitamin and mineral malabsorbtion problems.

Anti depressants cause weight gain.

Lack of B vitamins cause depression.

Lack of being able to absorb and use calcium causes sugar and carbohydrate cravings.

If the "nutritionist" is telling you to eat a low fat , high fiber diet with lots of whole grain breads and very little meat, you should run as fast as you can away from there, because they are clueless as to what sort of diet works for the insulin resistant type of person. You need vegetables, fruit, meat, nuts and healthy fats or you'll blimp out. You may or may not be able to tolerate small amounts of alternate carbs like beans, potatoes, corn, rice, tapioca. You may or may not be able to tolerate soy, which may depress your thyroid function. Ditto on the dairy products.

If you are taking meds and go to a gluten free diet, don't forget to take gluten free meds.

It costs nothing to try the diet other than some of the healthier groceries cost more.


Good luck. Try to avoid having someone mutilate your insides, you already have enough problems.
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#6 CarolAnne

 
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Posted 11 June 2008 - 06:57 PM

I agree with what everyone else is telling you. DON'T do the surgery until you've tried the gluten-free diet for at least 6 weeks. I'm an overweight Celiac...my weight gain is caused by my disease. My body thinks it's been starved for years...and so stores everything I eat...carbs, fats, even proteins. I've been struggling for years to figure this all out...and I'm finally on the right track. I'm feeling just wonderful again!!

You probably want to step back, take a deep breath, and re-evalute what's going on. All those Doctors and all those tests sounds like a poor puppy chasing it's tail. I'm sorry you're having such a hard time with this. I know it can be difficult. Please be patient with yourself. Go slow...records all your symptoms...change your diet and keep track of how you feel. You should begin to notice something within 48 hours...it's that quick sometimes.

When I have others come to me for help (I'm an herbalist) I often advise they follow a very strict diet for at least 6 weeks. Real food...absolutely nothing processed...nothing canned or boxed...nothing that you haven't created yourself with real ingredients. Fresh or frozen vegetables and fruit...real meat, seafood, fowl...butter & olive oil...colored cheeses and fresh eggs...real juices, herbal teas, and plenty of water. NO white sugar, no white rice, no white potatoes...you can substitute with honey, wild rice, and sweet potatoes. NO dairy...and absolutely NO grains at all for at least six weeks.
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#7 Aleshia

 
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Posted 11 June 2008 - 09:53 PM

before getting a gastric bypass I would be very certain you know of the side effects. if you are already suffering from malnutrition/malnurishment I would advise against it. I believe the way it works is they "bypass" part of your intestines so that your food doesn't get absorbed... that way you can eat more and not have to worry about it. it is better to get to the root of your eating/weight issues than to have something that could mean blood transfusions for iron for the rest of your life (like a woman I know who had one done) just a word of caution :)
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#8 aikiducky

 
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Posted 12 June 2008 - 01:21 AM

The combination of "increased intraepithelial lymphocytes at the villous tip" and a negative blood test makes total sense, you know. The blood tests tend to only turn positive after there's more damage to the intestine. The clinical proof you need is not the blood test, but a trial period on the diet.

If you don't want to try the diet without an iron clad diagnosis, you can go on eating gluten for another year or two, and hope that your intestine develops more damage. Sorry to put it that bluntly but the thing is, I don't know of any way to "officially" diagnose celiac at the stage where you're at now. That might change in the future but for now I think you're stuck with either try the diet or wait.

Oh, it's true that the rash you have might be the skin form of celiac. In that case a biopsy of the skin NEXT to (not in the middle) of a blister might show that it is indeed celiac, in which case you have your diagnosis. That's one thing you could still try. You need a dermatologist who is familiar with celiac though.

Do they actually perform gastric bypasses on people with chronic diarrhoea? That doesn't sound sensible to me? Is it expected to help the D somehow?

Have your vitamin levels been checked to make sure you're not malnourished? You know, not that I know so much about gastric bypasses, but it doesn't sound like a good idea if indeed you have celiac.

Pauliina
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#9 ShayFL

 
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Posted 12 June 2008 - 04:16 AM

I agree with everyone here. We lost one of your nearest and dearest friends to complications of gastric bypass surgery 2 years ago. Everything went fine except he picked up staph in the hospital (which is VERY COMMON these days). He was dead within 2 weeks. We still miss him so much and just wish he would have worked harder on diet and lifestyle....He left behind 2 beautiful daughters.....I wouldnt do it......no way.......
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GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

#10 vmlehtonen

 
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Posted 12 June 2008 - 05:45 AM

If I were you, I would be interested to see what blood tests the doctors ordered. I am having lots of different GI problems as well, and they ordered a celiac panel for me just to humor me and I MADE them do an IgA test as well, they didn't want to, and guess what? I came up IgA Deficient. If you are IgA deficient you can get a false negative on the serology tests. I would make sure they did an IgA test on you, and if not, I would request one, and if you are IgA deficient, then I would have them re-do the serology like this: AGA IgG, TtG IgG, EMA IgG.....these tests can be done using IgG instead of IgA if you are IgA defcient. My doctor wouldn't order them at the time I wanted her to, so now I have to go in and "talk" with her about it and "ask" to be redrawn! How frustrating. I'm curious to see what your numbers were. My daughter is also having this problem, except her doctor did order an AGA IgG with her panel, and she came up positive for that.....she was a 22 (0-10 being normal)......but one of the tests I mentioned above is not enough for a diagnosis, but if you get two or all of them positive, then that would tell a very interesting picture!

Vickie
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