Hello Celiacs disease, a bit confused about results

[Tharrell]

Ok, so my lates blood test came back and neuro said two came back positive for celiacs, but one was negative. I was told to contact my gastro, but till then I worry. Would you know I absolutely love bread! Sigh!
Any way, here are the results, maybe some one can shed some light?
Tissue Transgluaminase IgA .9
Gliadin Antobody Iga 37.9
celiac Reflex Panel 93 - standard range 69-382 mg/dl negative
Lyme and Folate were negative as well.
I'm confused on two positive and one negative.

[jazzlover]

MANY are gluten intolerant (and have negative celiac tests) .. so if you have even ONE test positive for celiac, you need to be VERY VIGILANT about your diet. It often happens that those who eat lots of bread bite the dust earlier than those who don't.

Your health should improve now that you know about it!

A great site for help is www.celiac.com

[Tharrell]

Awwww, not what I wanted to hear LOL! Sorry, but that was one positive test not two as I thought. Well, I do love research. Thank you for the link! it makes for a great starting point.

[Rose G]

As far as I know, the only real test for celiac is a biopsy done during a scope by a GI.  A friend of mine tested positive with blood only, ate gluten free for 2 years, only to finally see a GI, went back to gluten, then had the biopsy and no celiac.  Had been eating gluten ever since and is fine.

As always, if you stop gluten and feel better, then you should go for it.  I have been hearing more and more now though, if you are not celiac or gluten intolerant, you should not stop eating it.  There are many good things nutrition wise about foods that include gluten.

[Sleepy In Seattle]

I don't have Celiac but feel SOOOOOOO MUCH BETTER on a gluten-free (and dairy-free) diet - it's AMAZING.

The tests are really not very good - the REAL test is to try going GF for a few months and see how you feel. Then add it back in, and see what happens.

I wish I weren't sensitive to it, but there's really no doubt - I don't need any lab to tell me that! 

Give yourself time to go gluten-free - educate yourself all you can (there are lots of great websites - a favorite is "Gluten-free girl"), and don't expect to be perfect at it right away. It takes TIME to learn how to be GF - and in the beginning you will mess up and eat gluten - either accidentally, or just because you can't STAND smelling cinnamon buns and you cave and "cheat" on the diet. It's okay - 99% of us do - we're HUMAN, after all! Don't give up! Just keep at it, and if you ARE sensitive to gluten, then eventually the health benefits you enjoy will make it worth committing to the diet changes long-term.

I have been GF for over a year now, and I'd say it took me about 10 months before it got to be habit, and not really a difficult thing for me anymore. The first 2 months were hardest, and I "fell off the wagon" a lot. The next 3-4 months were tough, and EXPENSIVE, because I tried to eat the same way, only using GF products. Then I kinda went on a modified "Paleo" type diet (I am not super-strict), which just generally reduces any kind of grain - you eat mostly lean protein (meats, eggs, dairy - in my case only sheep and goat, etc) and veggies, and some fruit - I also eat lots of nuts, which are not strictly Paleo but work well for me. Another few months to adjust to that - and now I just eat so DIFFERENTLY than I used to, I don't even really miss the gluten stuff. I haven't had pizza in months, and I don't even miss it! (If you knew me for most of my life, you'd be checking me for head trauma right now - I was the QUEEN of bread and cheese!!!!!).

I have tried going back and eating both gluten and cow-dairy few times, and it makes me feel SO LOUSY (and sets off my Lupus/Sjs) that I just don't want the stuff anymore.

Sorry you are going through all this - but the UP-side is that if you really ARE sensitive to gluten and you eliminate it, you'll probably see a lot of benefits!!!! 

[engy]

I have Celiac disease ( all tests, including biopsy positive). However, depends on your gastro. My gastro. did scope & biopsy but said it isn't necessary anymore. He says doctors diagnose by antibodies for Hashimotos & Sjogrens so should be enough for Celiac. Many other gastros. agree but the old school ones still insist the "gold-standard" is a biopsy.

Have them do a gene test (blood test). That will also help with a diagnosis.

My daughter is diagnosed Celiac based on bloodwork, and family history, and symptom free after 1 week being gluten free. no way was I letting them scope my 7 year old! Her pediatric gastro. agreed that there wasn't a need & he had enough for a DX.

My sil is gluten intolerant & doesn't get as sick as me & swears to never eat gluten again. She feels so much better ithout it. I have no choice to not consume gluten as eating it gives me intestinal & neuro. symptoms so severe it puts me down for days.

Good luck~ tons of information now! When I was diagnosed people never heard of gluten!

[Tharrell]

Wow, thanks for the great replies! I'm dealing with a lot of neuro stuff as well. I've had intestinal problems since I was 4 month old! That's 44 years of no diagnosis except an untreated IBS. I'm so used to it I never had things checked out until my new neuro thought of it. Even new gastro didn't think to run the test. I still like him though, go figure :-)

[irish]

I have a hubby, son and 5 year old grandson with celiac disease. I have to tell you that after cooking gluten free since 1978 it is not that big a deal. Nowdays you can buy all the flours, etc and bake many things that are great. The GF banana bread is awesome. I have many recipes for GF pie crusts and the list goes on and on.

The main thing is that there are so many products out there that are GF that it is no longer a challenge. When I started cooking GF there was hardly anything out there. My hubby didn't eat bread for years until we were able to access GF bread back in the 90's. Check out your local grocery stores as many of them have GF products. There are many canned products that are GF now and a couple of soup companies have a large line of GF products. Don't buy specialty foods if you can help it as they are grossly overpriced.

The interesting thing is that meat, potatoes, vegies, fruits, GF pastas, breads make meal planning easy. GF bread makes great grilled cheese sandwiches. I bake cookies, pies, cakes, etc. Check out GF recipes doing a search and also go to http://www.celiac.com and you will find a large amount of info.

The biggest hurdle is the increased cost of foods, but if you shop wisely you will manage just fine. I make homemade soups using mashed potatoes as the cream base for many of my soups. You will be forced to cook healthier. Good luck. Irish

[sjenny]

Here is a direct quote from cardiologist Dr. William Davis from his blog Wheat Belly as to why none of us should be eating modern wheat:

1) No other food-sucrose, high-fructose corn syrup, sugary soft drinks, French fries, etc. has its very own opiate that stimulates appetite. The gliadin protein, digested down to 5 tetra- and pentapeptide exorphin (exogenous morphine-like compounds) units, binds to the opiate receptors of the human brain and stimulates appetite.

The increased appetite of wheat exorphins cause you to consume 400 or more calories per day, every day. Those calories are not from pork chops or salmon; they come carbohydrates almost exclusively-chips, cookies, crackers, pretzels, candy and other goodies, the foods that raise blood sugar.

2) Wheat contains the complex carbohydrate, amylopectin A. Recall that the unique branching structure of wheat's amylopectin A makes it highly susceptible to digestion by the enzyme, amylase, in saliva and stomach juices, releasing glucose into the bloodstream literally within seconds of ingestion. This explains why two slices of whole wheat bread raise blood sugar higher and faster than 6 teaspoons of table sugar. High blood sugar obliges high blood insulin, over and over and over again in the world of the "healthy whole grain" eater. Over time, this leads to diminished responsiveness to insulin,insulin resistance-the foundation of pre-diabetes and diabetes. It also leads to creation of visceral belly fat which, in turn, worsens insulin resistance and inflammation.

3) Repetitive high blood sugars, over and over again, lead to pancreatic glucotoxicity damage to pancreatic beta cells that produce insulin. (Here is a representative discussion of this effect.) Death of pancreatic beta cells is, for all practical purposes, irreversible: When they're dead, they're dead and do not regenerate. Foods that raise blood sugar the most cause the most glucotoxicity. What food dominates the modern diet and has among the highest of glycemic indexes? Yup: wheat.

4) A vigorous and unending flow of carbohydrates fuels the process of liver de novo lipogenesis, the conversion of sugar and carbohydrates into fatty acids in the liver. Among the results: plenty of fatty acids and triglycerides in the bloodstream. This causes lipotoxicity, death to pancreatic beta cells that produce insulin. So those typical triglyceride levels of 150 mg/dl, 200 mg/dl, 500 mg/dl or higher that persist for extended periods kill off pancreatic beta cells.

5) Leptin resistance. Gain weight, lose the satiating/appetite-limiting effect of the leptin hormone. It means that appetite is not turned off. High leptin levels are also toxic to the pancreas: leptin toxicity.

6) Inflammation-Insulin resistance, visceral fat accumulation: It all adds up to extravagant triggering of complex inflammatory pathways signaled by increased c-reactive protein in the bloodstream, increased interleukins, increased tumor necrosis factor, and many others, as well as increased inflammatory white blood cell content of the fat itself (like pus). The process is made worse by the entry of foreign compounds into the bloodstream and lymph permitted by the gliadin protein. The same gliadin that is broken down into exorphin polypeptides can also remain intact and exert bowel permeability increasing effects via the zonulin pathway described by Dr. Alessio Fasano; this occurs in people with celiac disease and it occurs in people without celiac disease.

7) The lectin of wheat, wheat germ agglutinin, mimics insulin. It stimulates many of the same processes triggered by insulin in fat cells, including reduced oxidation of fatty acids.

That's a partial list. Yes, a partial list of how wheat causes diabetes.

Note the part about wheat causing high C-reactive protein, inflammation and bowel permeability which in my opinion can be a major cause of Sjs.

sjenny

[jazzlover]

Wow, thanks for the great replies! I'm dealing with a lot of neuro stuff as well. I've had intestinal problems since I was 4 month old! That's 44 years of no diagnosis except an untreated IBS. I'm so used to it I never had things checked out until my new neuro thought of it. Even new gastro didn't think to run the test. I still like him though, go figure :-)

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Stupid gastro! Sounds like mine!

Here is an article about gluten intolerance. Do you see yourself here?  ..  undergroundhealth.com/six-signs-you-are-gluten-intolerant-and-may-not-even-know-it/

[tiffferoni]

Going gluten free really isn't that bad.  I did it on my own after being told by my doctor that i did not have gluten issues.  Since going gluten free I feel soooo much better.   I had been living with "IBS" for years.  I have not had any problems since.  If I eat gluten though I know that I have as I become very ill for a short time.  Good luck!

[Winnie]

Tharrell
If your doctor is unsure about diagnosis, please get a biopsy before starting a GF diet.  It will not show if you are GF.  My doc did a biopsy 6 months later and I have no idea what he thought he would find. 
My bloodwork is DGP IgG - positive
                          DGP IgA - positive
Everything else was negative, including the biopsy.  My genetics screeening indicated readings from very high to very low and states "unable to interpret HLA typing results." 

Make sure you find out if your insurance picks up the genetics test.  Mine didn't and it cost me several hundred dollars and I didn't find out anything.

Winnie

[Tharrell]

Winnie, I already read that I need to follow my natural diet if I need to do a biopsy. Otherwise I can get an incorrect result. Still waiting to hear from him.
I just had another blood test come back which shows I am vitamin B6 deficient as well. Apparently not a common occurance in the normal population. I'm puzzled because I eat pretty healthy including the foods that naturally have this vitamin. Apparently I fell off the normal population list when my autoimmune disease showed up.

[jazzlover]

I'm puzzled because I eat pretty healthy including the foods that naturally have this vitamin. Apparently I fell off the normal population list when my autoimmune disease showed up.

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With celiac disease, your gut cannot absorb nutrients properly. Hence the reason you are deficient in B-6. You probably could use some B-12 too.

And the gluten (and/or candida) probably caused the SJS.

[Tharrell]

I don't know if neuro tested me for b12, but last December the test came back normal. Back then they didn't think to test me for B6 or celiacs. I learn something new every day now.