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Sketch

Getting Tested This Week

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From reading the site it looks like most people summarize there story so that is what I will do real quick like.

33 year old male with a pretty long history of what the doctors have basically said "probably IBS" but were never sure along with GERD for about the same amout of time.

In my early20's I suffered a bought of uncontrollable diarrhea that made it so I had to quit my job and severly restrict my lifestyle. I developed what the doctors said was GERD at the same time over the last decade have suffered through many a night of projectile vomiting, but no real heartburn ever. Just the acid.

Four years after this first flareup I had another major flare where I lost 40+ pounds in a month. In between I always had some problems, mainly associated with eating ice cream, not getting enough sleep, or life stress, or eating foods that also caused the GERD symptoms (spicy, acidic, etc.). With this major flare what I did finally, when the doctors had no answers even after colonoscopy and a biopsy or two (can't remember what it was for at that time) I ceased taking all meds, fasted for 3 days and slowly put one food item at a time back into my diet.

Over the next 8 years I have slowly lost the ability to eat certain foods; fatty meats, some breads, eggs for example. I have also had consistent times of diarrhea and bowel problems (gas, tenderness and so on) as well as fatigue, and according to my wife mood shifts. This year, after I started suffering from major vomiting and pain in the upper half of my body the doctors finally discovered I had a diseased Gal Bladder and took it out. For 3 week I was perfectly fine, no symptoms to speak of. Then I got a staph infection at the IV site. They put me on some major wide spectrum antibiotics and since then I have had increasing major problems with diarrhea, weight loss (about 20 pounds in 2 months), fatique, panic and anxiety issues, all of which are getting in the way of my work as a college professor (the diarrhea hits at any time and with little warning time to get to a bathroom).

I finally got the insurance to let me go to a specialist and the first thing he brought up was Celiac Disease, based on the symptoms I told him. He scheduled me for a scope from both ends and multiple biopsies later this week.

My questions are as follows. Is it normal for someone with Celiac to have "ok" times and then major flare times? Is the biopsy definative as a way to rule out Celiac if it comes back negative and to rule it in if it comes back positive? Thanks for the answers in advance.

BTW: my wife has Chron's disease, so I have been through all this with her and am very grateful for these online groups. They were amazingly helpful with her disease and if I should end up having Celiac I can already tell this group will be a great resource. I appreaciate everyone being willing to share info.

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I am on my way to bed, so I am sorry that I will be making this short. If the biopsy is positive, it is a definate answer. If it is negative, it could be a false negative. The biopsies should be taken from 8 to 10 (?) different areas and the right area could be missed. And yes, many of us have suffered on and off with some of the worse symptoms before we got diagnosed. I used to have what I called mini flu's as they would only last 8 to 12 hours and then be gone. But, I then got seriously ill several months before my doctor thought of Celiac. I hope you finally get an answer. But, you could also consider going gluten-free, if the biopsy comes back negative. You could try the diet for several months to see if you improve. You would then have your answer. Good luck and welcome to the forum.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Guest ~jules~

I deffinetly had times where I would feel better for awhile (not totally normal of course) but I would gain 5 pounds and be able to eat meals at these times. I actually used those exact words to my gi doc, to explain what I was going through. Flare Up. I just knew there was more to it than IBS, so I kept going back to complain until he started digging deeper. I had a colonoscopy, nothing. Three months later it got really bad again, so I went back and had my endo. and biopsies. The bloodwork was suspicious because my antibodies were high, but he actually diagnosed me with celiac because my biopsies showed it. Good luck with all your procedure, I hope that you get some sense of closure..Its horrible to be so sick and not know what is wrong, seems to be common around here :blink: Welcome to the board.....

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Thanks for the responses :)

With my weight, I have not had much trouble keeping it on when I am not ill, in fact before this happened I was just increasing my exercise and trying to lose a bit to help with the GERD. Celiac sounds a lot like what I have been experience the more I read about it, however the one thing that I find odd is that given my GERD diet restrictions, a lot of my diet consists of only breads, pastas, meats, cooked no acidic veggies, and many bland items that would contain wheat and other gluten products. And yet I while I have had discomfort quite often, I have not had the uncontrolled diarrhea I have read about nearly as often as I would expect given how much of these items I eat.

I think I may go ahead and try going gluten free whatever they find. Anything that will let life back to what it can be and allow me to enjoy my job again without worry about what might happen while I am a captive in a 4 hour class with 50 people watching my every move.

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Welcome Sketch! :D

I don't have first hand experience to offer....I'm one that didn't have obvious symtpoms. I went gluten lite due to allergies and then went through enterolab since I figured the blood draw would register from what I'd read. Please keep us posted as to your tests.

One thing I wanted to bring up is that if you do have celiac (and it sounds like you may) and if you do have damage to the intestines, it would interfere with some of the foods you have had to give up. As you heal you may find that you can add a lot of things back in.

Do a site search for gerd....seems to me others have this that are on the board.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi Sketch, and welcome to this board. Your story sure sounds familiar. Gerd is a very common symptom of celiac disease. Your Gerd diet may actually be what keeps you sick. Wouldn't that be ironic!

I hope that those scheduled tests will finally give you some answers. If the biopsy is negative, I also agree that trying the gluten-free diet would be a good idea anyway. Along with eliminating all dairy, as it sounds like dairy is a problem, too. And it would be best if you wouldn't replace dairy with soy, because it can cause the same problems.

By the way, Crohn's disease is often helped by a gluten-free diet, too. So, why don't you and your wife try the gluten-free diet together, you might both benefit from it. You might as well start right after the biopsies are taken, without first waiting for the results. You have nothing to lose.

I hope you figure it out and get your life back!


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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Sketch

due to overlong time in getting correct diagnosis, my husband developed GERD and ulcer of small intestine. So there's a connection and he too cannot digest fruits, vegetables and spices either along with gluten. He has a very restrictive diet too (as well as some others on this board).

One of foods he cannot tolerate either is soy.

Let us know how your testing went.

best wishes- D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Guest nini

welcome, I'm glad that you've decided to try the diet regardless of the biopsy results... keep in mind that you may have multiple food intolerances that show up after going gluten-free, so keeping a food journal is a very good idea. If you don't show ANY improvement at all on the diet, keep exploring other options, sometimes there are structural and chemical reasons for the ongoing symptoms, not JUST dietary, dietary is just one component. I also agree that the gluten-free diet should help with Chrons as well so why don't you and your wife do this together... There are a lot of great gluten-free pastas (mainly Tinkyada but I've heard there are some good ones imported from Italy), there are also some really good gluten-free bread mixes, my favorite is Pamelas Wheat Free Bread mix... Even if it's not Celiac, you may have non celiac gluten intolerance, which you still would need to treat the same way, with strict adherance to the gluten-free diet. My personal opinion is that wheat/gluten is toxic for everyone, and that only a select few of us are the "canaries in a coalmine" so to speak... we are more sensitive to it, alerting us to the possibility that their may be a problem with the whole grain...

in ancient times the wheat berry was much larger than it is today and over the millenia, man has altered this grain to suit his purposes, genetically altering it to the point that the wheat grains that are grown today have no resemblance to the wheat of ancient times. In fact there is no wheat in existence today that is not "genetically modified" by man... Have we altered this grain so much that it is now become toxic? I think so. And I think those of us with Celiac are the "early warning system"... just my humble opinion of course!

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Hi Sketch,

I just wanted to welcome you and remind you not to go gluten-free or even "gluten lite" until your testing is completed. Doing so will skew the results.

Good luck with everything--I agree with everyone above about your symptoms. Let us know how you do :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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