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Has Anyone Tested Negative But Has Every Symptom?


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15 replies to this topic

#1 jacqui

 
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Posted 26 July 2007 - 04:45 AM

Hi I have not been here in a while so hello everyone!

My question/concern is that my daughter Madeline tested negative for labs and biopsy but has both celiac genes DQ 2 and DQ 8.
She also has many symptoms:
constipated since birth - which led to mega colon - inability to control BM's. This has improved actually now that I am writing this since we went gluten free
cradle cap
severe eczema since about 18 months and now breakouts here and there
chronic UTI's
ostepenia which vitamin D I believe is digested in lower small intestine where they do not biopsy. I feel if they biopsied down lower she would have been positive.
and NOW supposedly ADHD, which I do not agree with, b/c I feel it is celiac. (She eats gluten at school and friends)
  • 0
IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.


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#2 kbtoyssni

 
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Posted 26 July 2007 - 05:30 AM

It's very possible. This disease is full of false negatives. It also takes a while to develop villi damage so she may not be old enough for it to show up. Or the doctor might not have gotten a biopsy of the damaged area.

I had a negative blood test so I'm diagnosed by dietary response. Try the diet - you'll know if she has it soon enough.
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Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

#3 taweavmo3

 
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Posted 26 July 2007 - 12:59 PM

I would try the diet 100%, you have nothing to lose but everything to gain. I have one biopsy diagnosed daughter, but my two boys tested negative. They both had nasty eczema (my older son's eczema turned into psoriasis) as well as stool issues. They both have improved with the diet, and my 8 year old now refuses any gluten since realizing how sick it makes him feel. False negatives are very common, I would definately give the diet a real chance. She may surprise you, and be completely on board with it once she starts to feel better.
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Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis
Age 8- dx'd Celiac March 2005
Age 6- gluten-free/cf, allergy related seizures
Age 4 - reflux, resolved with gluten-free/cf

#4 confused

 
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    Just cause i cant have gluten doesnt mean im dying

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Posted 26 July 2007 - 01:49 PM

hey jacqui, I was just thinking about you the other day.

I would put her on the diet and see how she does. Could she just been negative since most of you are already gluten free anyway. Or does she eat gluten all the time. How many biopsies did they take, maybe they just took them in the wrong place. Just because she has 2 celiac genes i would just take gluten out of her life, cause even if she dont have it know, she could later in life when it is harder to give it up or after more damage has been done.

Dont be a stranger.

paula
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gluten, casein and soy free
on low carb/low sugar diet

#5 Kristin2

 
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Posted 27 July 2007 - 10:05 AM

My daughter, who is also 8, tested negative for all but one of the blood markers. A biopsy was done at age 4 and they diagnosed her with "possible colitis" meaning damage to the lower intestine. She was already on a gluten-free diet at this time. She's been gluten, casein, egg, high fiber-free for the past four years and it is what keeps her healthy. Her doctor has rerun the blood tests yearly looking for antibodies and a definitive diagnosis, but it hasn't happened yet. He did say she could be a teenager before the blood levels get high enough! I still believe she may have celiac, but I've never been willing to put her through the long period of glutenizing for a positive test. So, regardless of the diagnosis, if going gluten-free keeps your daughter healty...do it! I also have another, younger, daughter who is gluten-free. She also tested negative for all but the same blood marker as her sister. We haven't done a biopsy, but due to the extreme ADHD that results from the gluten, her medical chart reads "keep off of gluten indefinitely".
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#6 tabdegner

 
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Posted 28 July 2007 - 10:57 AM

I tested negative w/both blood tests and biopsy. But I'm pretty convinced I have celiac. See my signature below -- strong family history, and I have hashimotos thyroiditis and just diagnosed w/type 1 diabetes. And ALL the symptoms of celiac.

When my symptoms got worse last year, my doctor did not want to do another biopsy. So I decided to go gluten free on my own. And it CHANGED MY LIFE!!! Within 5 days I had NO more symptoms that I had had for years. So I don't have an official diagnosis, but am gluten free.

I did a gluten challenge about 2 1/2 months after going gluten free. It lasted 48 hours and by the end I was so sick I could not go on. That was enough proof for me.
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#7 Guest_j_mommy_*

 
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Posted 28 July 2007 - 01:12 PM

Also remember......celiac genes sometimes need a trigger!!! I have had symptoms ALL my life!!! Pregnancy is what Triggered the gene for the disease to actually come out. The theory is I did only have IBS until that pt and then had celiac.

If you don't care about an official DX then I would try a FULL gluten-free diet!!! See if that helps and if it does...there you go!!

I hoep she feels better soon!
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#8 Christine E

 
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Posted 02 August 2007 - 07:07 AM

My three year old was diagnosed at 13 months, because he had the gene and the diet worked. He had negative blood work, which has continued to be negative, and a negative biopsy. Now, he is still young to be diagnosed accurately, which is why they considered the gene presence with successful diet acceptable for diagnosis. Try the full gluten-free diet-it's worth it if your daughter feels better and is healthy!
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#9 dadoffiveboys

 
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Posted 07 August 2007 - 08:40 AM

Hi I have not been here in a while so hello everyone!

My question/concern is that my daughter Madeline tested negative for labs and biopsy but has both celiac genes DQ 2 and DQ 8.
She also has many symptoms:
constipated since birth - which led to mega colon - inability to control BM's. This has improved actually now that I am writing this since we went gluten free
cradle cap
severe eczema since about 18 months and now breakouts here and there
chronic UTI's
ostepenia which vitamin D I believe is digested in lower small intestine where they do not biopsy. I feel if they biopsied down lower she would have been positive.
and NOW supposedly ADHD, which I do not agree with, b/c I feel it is celiac. (She eats gluten at school and friends)


My son has ADHD/OCD (we think) and we think possibly Tourette's and no positive diagnosis of any celiac disease or gluten allergy. We definitely noticed a huge improvement on the gluten-free diet. Consider all four of my boys, myself and my father are all affected by Gluten and NONE tested positive. I don't think the current tests are very good unless you already have severe damage. We came off reflux, asthma and my father off blood pressure medicines by simply 100% removal of Gluten. We are pulling two of my sons (2nd grade and Kindergarten) out of the public school system for next year because it is almost impossible for them to keep it gluten-free. I would definitely suggest you pack your own lunches for your daughter if she goes to school and NOT rely on them to keep her gluten-free - it won't happen! His last episode (which was May 07) was he was given Twizzlers (half sugar, half WHEAT :( ) at a class party. They were even trying to avoid anything with his allergy and figured it was 'just sugar'.... anyhow he STILL has the rash from it (it's now August!!) so he's not going back next year! Unfortunately, ADHD/OCD/Tourette's/Autism are 'comorbid' with auto-immune disorders and thus there is a very high probability she could have it. HOWEVER.. avoiding Gluten usually makes the condition much more bearable and very mild! On top of it, nutrient malabsorption can cause and/or make ADHD worse! All of us had constipation as a symptom which was resolved on the gluten-free diet.
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#10 sedunk

 
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Posted 07 August 2007 - 08:27 PM

Greetings,

I have eczema for four years. I am Italian, and have diabetics family members. My cousins had IBS. My other cousin has intestinal issues. Some family members also have eczema. In the past year I have been to my PCP,
allergics, dermatologist, ear nose and throat doctor and naturalpathic doctor. Everytime I eat almonds and wheat my eczema is out of control. I have been gluten-free for almost 4 weeks. Most of my eczema is gone. I was tested by an allergic and confirmed that I am allergic to wheat and almonds. I had been gluten-free for two weeks before my blood tests and they were negative. I still have a few more tests to go.

Good luck

Sara
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#11 jacqui

 
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Posted 09 August 2007 - 05:33 AM

Hi I have not been here in a while so hello everyone!

My question/concern is that my daughter Madeline tested negative for labs and biopsy but has both celiac genes DQ 2 and DQ 8.
She also has many symptoms:
constipated since birth - which led to mega colon - inability to control BM's. This has improved actually now that I am writing this since we went gluten free
cradle cap
severe eczema since about 18 months and now breakouts here and there
chronic UTI's
ostepenia which vitamin D I believe is digested in lower small intestine where they do not biopsy. I feel if they biopsied down lower she would have been positive.
and NOW supposedly ADHD, which I do not agree with, b/c I feel it is celiac. (She eats gluten at school and friends)



Hi All!!

Thank you very much for your input and your experiences.

M was gluten-free for a week and then went to Santa Cruz with friends for 2 1/2 days - even I could not forbid the Boardwalk funnel cake!! But other than that and a small piece of pizza with salad and NO crutons she is back to 100% gluten-free.

So far behavior waxes and wanes for the most part, but then again she has not truly been gluten-free for any time period other than above.

Please keep me informed of anything you know. I really truly appreciate it.

Jacqui
  • 0
IBS 1994
Endometriosis
Hashimoto's auto immune disease
Diverticulosis
Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease
HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!
Insomnia
Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel
Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.


#12 Luisa2552

 
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Posted 13 August 2007 - 04:26 PM

I am facing testing my girls next week. They are 8 and 11. Is it possible they won't have antibodies high enough? As I've posted before the 8 year old has some symptoms- not so much GI but growth issues, enamal problems, rashes and behavior and learning issues. The 11 year old has NO symptoms except for her new molars coming in with holes in them. i have only had the antibody tests (positive) but not the gene test. Biopsy results I get tomorrow. Should I be tested for the gene? Does that really matter? What about the girls? Just start with antibody screen?
I read your in your signature Jacqui that your husband's family is not going for the Celiac thing. My husband is also Mexican and he and is family are not supportive in the least bit. It's been very difficult. He thinks the girls are fine and I don;t need to test them. He used to think it was all in my head until I shoved Danna Korns book under his nose.
He's giving a little and finally agreed to have the girls screened even though he still thinks they're fine. Frustrating!!!
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Sara

IgA neg
IgG Pos
Biopsies showed blunted villi
HLA DQ2 and HLA DQ5
Gluten free since mid 7/07 and feel great

Daughters 8 & 11 Celiac panels negative

#13 lillybug

 
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Posted 14 August 2007 - 05:47 PM

Hello!
My daughter has celiac and was never offically diagnosed. She started showing signs and symptoms at 3 years old. They did a biopsy and it came back mostly negative. However, I went ahead and put her on a gluten free diet and all of her symptoms went away. So don't give up!!! Make sure you are truely giving her a gluten free diet....it is really easy to have cross contamination with this disease. We have to use a seperate peanut butter jar for Lilly, my daughter, and that sort of thing so that the bread crumbs are not mixed in. My daughter is now almost 6 years old and being gluten free has been hard but she feels so much better.

I wish you a lot of success with finding out if your daughter has celiac. Hang in there and stick to the diet for awhile to really give her stomach and intestine healing time.
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#14 ShayBraMom

 
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Posted 17 August 2007 - 06:16 PM

Acutally yes! I'm very new to this but I know one thing! Newer Studies separate the people with all of the Symptoms of Celiac but negative results for Biopsy and blood as NON-Celiac-Desease. It ahs all the Symptoms like Celiacs, the only difference is that in the non-Celiacs the Immunsystem does NOT attack the instine, in Celiacs it does! It's called NCGS (Non-celiac-gluten-sensitivity), the treatment is exactly the same as with Celiacs!


Hi I have not been here in a while so hello everyone!

My question/concern is that my daughter Madeline tested negative for labs and biopsy but has both celiac genes DQ 2 and DQ 8.
She also has many symptoms:
constipated since birth - which led to mega colon - inability to control BM's. This has improved actually now that I am writing this since we went gluten free
cradle cap
severe eczema since about 18 months and now breakouts here and there
chronic UTI's
ostepenia which vitamin D I believe is digested in lower small intestine where they do not biopsy. I feel if they biopsied down lower she would have been positive.
and NOW supposedly ADHD, which I do not agree with, b/c I feel it is celiac. (She eats gluten at school and friends)


  • 0
Susi with Shayden and Brandy
Shayden, pos. with DQ 2, pos. for Glutensensitivity with Tissuetransglutaminase Stool TgA 45 Units
Brandy, pos. with DQ2 + DQ8, DX Celiac Nov.07, gluten-free since Nov. 1st 07, Tissuetransglutaminase Stool TgA 63 Units
Me: Gastroscopy negative f. Celiac, IBS, Oesophagitis, Hiatus-Hernia

#15 hathor

 
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Posted 18 August 2007 - 03:47 AM

If you find it hard to commit to a gluten-free diet without positive test results of some kind (I know, I was in the same category), you could always try Enterolab. They say the antibodies they test for show up prior to the time ones in the blood do, both of which happen before villi damage is observable. Of course, as folks have already told you, enough samples might not have been taken for biopsy or not in the right places. I've also heard of doctors who just eyeball the samples and don't look through a microscope ... and if they did, don't know what to look at. I'm not an expert about endoscopy results. I've just heard people say that doctors had called things negative, then second opinions were obtained from those of greater expertise and the results were then proclaimed positive.

False negative blood tests are also possible, if one is low in IgA overall.

Finally, one can be damaged by gluten other than in the villi. At least some think so and I'm inclined to agree. :D

Given the strong family history, I really think it would be unreasonable to conclude that gluten isn't a problem, despite the negative test results.

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McDougall diet (low fat vegan) since 6/00
Gluten free since 1/6/07
Soy free and completely casein and egg free since 2/15/07
Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07
Fecal Antigliladin IgA 140 (Normal Range <10 units)
Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)
Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)
Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 06xx
Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)
Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)
Fecal Anti-Soy IgA 119 (Normal Range < 10 units)




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