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whattodo

My Doctor Says I Dont Have Celiac Disease

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I went to see the specialist last night to get my results of my biopsy. She says that it was negative for celiac disease. Although my duodenal tube did show some inflammation she is not linking the two.

I mentioned to her that i was off gluten for a while before the test and only went on gluten for a week before the biopsy. She said that if i had celiac disease that there would be some sign of it in my duodenal tube but there isnt. The inflammation is not enough of a sign.

I know that my symptoms were triggered last september and have been struggling with a sore stomach ever since. Could it be a case that i caught it in time to do enough damage. My doctor said that inflammation is not a sign that the disease has started.

All my blood and bone tests have been fine so was my blood for celiac.

My other symptoms have been a numb face and sore thumb joint. Also very tired and loss of 24 pounds.

They cannot find any answer for me, they know something is causing my dudeneum tube to become inflammed but they do not know what.

Could it be a food allergy to something other than gluten? The only thing i found to help me is mash potatoes??? It actually feels like it is getting better the day after i eat them but then it comes back.

I really dont know what to do anymore, should i continue with gluten free diet? I dont even know if its helping me as only been on it for a month and its only slightly better. How long should i stick it out. I dont want to be off gluten if i dont have to especially if its another allergy.

I know that i have a candida problem as i got tested but not following a candida free diet. The only symptom i have for this is a really white coated tongue. It caould also be making me tired i suppose. Does anyone know if candida cause the duodenum tube to be inflammed.

Please can someone give me some advice? I just dont know what to do

many thanks

Jason


Hope i dont become a nuisance but there are so many questions i need to ask

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Do you feel better on a gluten free diet?

The Marsh test for damage of the villi only kicks in by the time you have reached the third point (out of four) of the destruction of your villi and by the fourth stage they may not heal. :( I think the testing is barbaric and if you had been off gluten for a time it might not show or it might show as "irritation" IMO but I am not a doctor.

I have little respect for most doctors either, I have encountered far too many who are idiots and I am not alone in this.

There are good doctors though and it is important to try and find one, and perhaps your doctor is one of them and you do not have celiac but clearly you have a problem, losing 24 pounds, being tired all the time and a numb face are not good. :(

You say that your face is numb, that could be Bell's Palsy. <_<

You could have nutritional deficiencies causing you problems, can you ask your doctor to check you B12 and D levels?

Can you say more about what happened when you got sick, was it all of a sudden? I'll look to see what else you have posted.

:)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Only being back on gluten a week could yield a false negative...

How long must gluten be taken for the serological tests to be meaningful?

Our recommendation is to ingest at least 0.3 g/kg/day of gluten for two months prior to the serological tests. However, if somebody experiences symptoms during the gluten challenge we recommend to perform serological tests earlier.

https://www.celiac.com/st_prod.html?p_prodi...-54107391630.bf

Even then there are some problems with false negative results...

False Negative Serological Results Increase with Less Severe Villous Atrophy

Out of those studied, 71% had total villous atrophy, and 29% had partial villous atrophy. Serological results indicated that only 77% of those with total and 33% of those with partial villous atrophy actually tested positive for celiac disease, and it did not matter whether the patients presented with classical or silent symptoms.

..."Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature."

https://www.celiac.com/st_prod.html?p_prodi...-54107391630.bf


Karen B.

diagnosed with Celiac Nov. 2003

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Hi Whattodo,

When I had my endoscopy, it was something similar. I already had negative blood tests for antigliading IgA and anti-tissue transglutaminase IgA. The doc took the scope through the stomach and duodenum, and then stopped. He saw inflammation of the stomach, took a biopsy of that, but no biopsy of the small bowel.

There are problems:

1. Damage from celiac is often spotty. If the only look at part of it, they might miss damage later. When testing for celiac is indicated, it is recommended to take several biopsies from the whole length of the intesting.

2. Damage from celiac presents more frequently in the lower parts of the small bowel. In my case, he didn't look past the duodenum, meaning that although it "didn't look like celiac" to him, he may have seen only severe cases of celiac in which the full small bowel looked bad to the naked eye. In earlier stages, celiac damage can be lower, patchy and microscopic.

3. Damage to the small bowel is part of an advanced disease process. Symptoms generally begin years before this damage is apparent. In the use, biopsy of the small bowel is considered by the medical establishment to be the only truly definitive, or at the least the "gold standard," test for diagnosis. However, celiacs in the US are diagnosed *on average* ten years after symptoms begin. This should say something about the delay our mode of testing imposes on patients.

I went through a private lab here called Enterolab. A lot of people on the forum trust it, although it isn't quite widely accepted in the medical establishment as yet. I vetted them rather thoroughly. I've worked in similar labs, and so I felt competent to evaluate their methods. They are based on very sound biological prinicples.

They do tests for anti-gliadin and anti-ttg, just like the blood tests normally done. In fact, they use the exact same assay and identical reagents to the blood tests. The difference is that they test stool instead of blood. Why is this? Because IgA is manufactured primarily in the gut. Hence, testing stool is far more sensitive (picks up far more positives) than testing blood. If you have either of these types of IgA, whether in stool, blood or skin, you definitely have autoimmunity of the type seen in celiac, regardless of the present state of your gut. If you gone seeking help because of symptoms, then obviously some damage is there whether picked up on your scope or not. ERGO....Celiac. Or something very much like it.


Enterolab:

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 9 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1223 Units (Normal Range <300 Units)

Fecal Anti-Soy IgA 18 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,3 (Subtype 8,7)

Gastritis dx 10/24

Eosinophilia of large bowel dx 10/29

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I am also not so trusting of Drs or specialists or the test results... everything seems to be open to interpretation...

We had good experiences with a kinesiologist/herbalist. They do muscle testing to see if the herbs are good for your body and in what amount. Again, some are better than others, so see if you can get a recommendation.

My youngest had the biopsy done and the results were inconclusive. But she has the gene. But her intestines were "Chronically inflammed" to the point that they asked what medication she was on for it - None. We ended up takign her off of all dairy - like a severe allergy - and she is doing much better. I still don't necessarily think the gluten issue is resolved, but for now she is happy, healthy, and growing again. Maybe dairy or a food allergy is trouble for you too?

I would start to follow the candida diet. You need to get that resolved first.

Hope you feel better soon.

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I HATE that!! My thumb joints get sore, too. It's the oddest symptom. I posted on the other thread you started here ... don't want to add that topic to this one.

Some celiacs do not have their damage show up in their biopsy. Some of us don't have celiac yet see some improvement on the gluten-free diet.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I know that i have a candida problem as i got tested but not following a candida free diet. The only symptom i have for this is a really white coated tongue. It caould also be making me tired i suppose. Does anyone know if candida cause the duodenum tube to be inflammed.

"Only symptom"? I think EVERY symptom I read could be from candida & the often co-existent leaky-gut and the additional food sensitivities created by leaky-gut!

It is ABSOLUTELY making u tired.

And I'm pretty sure (>85%) the 3 combined conditions can cause the inflammation. Wait - make that 95%.

Confirmed Candida problem = go on a strict anti-candida diet to get better.

It's not easy, but it's just a matter of how much u want to feel good.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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I agree with Tom. You absolutely need to go on that candida diet! Eliminating gluten, dairy and soy wouldn't hurt, either, as those are very hard on your digestive system (not to mention the rest of your body).

If your tongue is coated like that, your candida must be pretty severe. No wonder you feel lousy and have no energy.


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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I did a search for candidia symptoms and as Tom said pretty much all of your symptoms are on the list. As much as you hate the idea of the candidia diet it could be the answer you are searching for. Here is the symptom list I found.

incapacitating fatigue

concentration/focus problems

short term memory

painful joints

muscle aches

extreme tightness in the neck and shoulders

acid reflux

brown colored mucus in the back of the throat

white or blood blisters in the mouth/tongue/throat

unrefreshing sleep

sore throat

white coated tongue

aversion to be touched - "crawling" skin

chronic sinusitis

frequent urination

headaches including migraines

visual blurring

sensitivity to light

eye pain

depression

irritability

anxiety

panic attacks

personality changes

mood swings

chills

night sweats

canker sores

shortness of breath

hypertension/high blood pressure

dizziness and balance problems

sensitivity to heat/cold

alcohol intolerance

gluten intolerance

irregular heartbeat

irritable bowel

constipation and/or diarrhea

painful gas/abdominal bloating

low grade fever or low body temperature

numbness/tingling in the face or extremities

dryness of mouth and eyes

difficulty swallowing

projectile vomiting

menstrual problems (PMS/endometriosis)

recurrent yeast infections

recurrent ear infections

rashes

dry/flaking skin

eczema

dermatitis

acne

skin discoloration/blotchiness

dandruff

jock and rectal itching

chronic athlete's foot

chronic toenail and fingernail fungus

ringing in the ears (tinnitus)

allergies

sensitivity to noise/sounds

sensitivity to foods

sensitivity to chemicals

sensitivity to odors

anemia

weight changes without changes in diet

lightheadedness

feeling in a fog

fainting

muscle twitching

muscle weakness

jerky-leg syndrome

low sex drive

If I were you I would start with the candidia dx you already have. Try the diet as much as you hate to and see if it resolves your issues.

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If you have a white tongue, you need to go on the candida diet!!! You should also take probiotics, use coconut oil, and ask your doctor if he'll give you a prescription for Nystatin ... it's a benign anti-fungal.

I also think you need to find out WHY you have candida. Healthy people just don't develop a candida problem for no reason.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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If you have a white tongue, you need to go on the candida diet!!! You should also take probiotics, use coconut oil, and ask your doctor if he'll give you a prescription for Nystatin ... it's a benign anti-fungal.

I also think you need to find out WHY you have candida. Healthy people just don't develop a candida problem for no reason.

CarlaB, i have diverticular disease which at my age uncommon. Diverticular Disease is cause by constipation and pressure built up in the bowel. This could be my first guess. My second guess would be the fact that a few months back i had helical Bacter and had the strong dose of antibiotics. Other than these two i am unsure of why i have candida. I will go on the diet but i have just been given some prescription nutrition drinks from my dietician to put some weight back on me. I will start the candida diet after that.

I am still unsure if candida is the cause of my inflamed duodenal tube, i believe it could contribute to my numb face and sore joints.


Hope i dont become a nuisance but there are so many questions i need to ask

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Guest maybe I have celiac
I went to see the specialist last night to get my results of my biopsy. She says that it was negative for celiac disease. Although my duodenal tube did show some inflammation she is not linking the two.

I mentioned to her that i was off gluten for a while before the test and only went on gluten for a week before the biopsy. She said that if i had celiac disease that there would be some sign of it in my duodenal tube but there isnt. The inflammation is not enough of a sign.

I know that my symptoms were triggered last september and have been struggling with a sore stomach ever since. Could it be a case that i caught it in time to do enough damage. My doctor said that inflammation is not a sign that the disease has started.

All my blood and bone tests have been fine so was my blood for celiac.

My other symptoms have been a numb face and sore thumb joint. Also very tired and loss of 24 pounds.

They cannot find any answer for me, they know something is causing my dudeneum tube to become inflammed but they do not know what.

Could it be a food allergy to something other than gluten? The only thing i found to help me is mash potatoes??? It actually feels like it is getting better the day after i eat them but then it comes back.

I really dont know what to do anymore, should i continue with gluten free diet? I dont even know if its helping me as only been on it for a month and its only slightly better. How long should i stick it out. I dont want to be off gluten if i dont have to especially if its another allergy.

I know that i have a candida problem as i got tested but not following a candida free diet. The only symptom i have for this is a really white coated tongue. It caould also be making me tired i suppose. Does anyone know if candida cause the duodenum tube to be inflammed.

Please can someone give me some advice? I just dont know what to do

many thanks

Jason

Are you taking any proteins? Such as casein found in milk?

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I am still new to this and not an expert by any means but our experience was our son had a high Ttg(156) and a neg biopsy 4 years ago.

the Gi Dr in a large hospital and he was even in a magazine with his accomplishments told us no villi damage no celiac disease. Don't change his diet and see ya. No follow up care or anything.

It took 4 years for the intestinal damage to be severe enough and make him so sick he was out of school for over 2 months. We did find the villi damage then.

My son has Down syndrome so he was given the blood test as a recommended screening in health care.

I believe people do have positive blood tests before the severe damage is done.

I believe my son had celiac disease for the 4 years before the intestinal damage was so severe it finally shows up on biopsy.

Good Luck

Karol

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