Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Help Me Interpret This. Thanks.


smiles

Recommended Posts

smiles Rookie

Fecal Antigliadin IgA 34 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

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

Fecal anti-casein (cow


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

I read it as saying you have double DQ1 genes like me and many others. Many doctors feel double DQ1 is not celiac, but gluten intolerance. In truth, double DQ1 genes mean, double trouble.

I am soy intolerant too. Some people who can't eat soy, can still have soy lecithin, some can't. Some say the protein in soy that makes us ill is not in lecithin or in soy oil. Lecithin does not bother me, but I can't handle soy oil.

Open Original Shared Link This is a website put together by a wonderful woman named Cara, she too has double DQ1 genes. It may be very helpful for you.

ShayFL Enthusiast

To add to what Deb has said (which I agree with), you would do best to stay on your gluten-free diet. You are feeling better. Yeah!! :)

If it were me, I would avoid as much Soy as possible by sticking with whole foods and avoiding processed foods.

I personally do not believe we are meant to eat dairy. And it causes me to choke on my own mucus. You can eliminate it for a few months and then reintroduce to see if you react to it.

You could have Candida overgrowth in your intestines.

A good pro-biotic can help as can avoiding sugar and sweet foods for awhile. If you google "Candida" you can learn A LOT.

smiles Rookie

Thanks Darlindeb and Shay!! That was very helpful. Shay- I am actually treating myself for candida too. I have been sugar free for a month now and I have been taking lots of probiotics, antifungals, etc. It is so frustrating that I can not have the foods I was eating before. I was eating out all the time-- no more outback blooming onion. :(

smiles Rookie

darlindeb,

I was wondering if you could tell me what kind of symptoms you have had with the soy? For some reason I have always avoided soy milk- not sure why- just did not like the way it made me feel I guess. As for the processed foods I would eat them all the time and I am not sure I ever noticed anything, but I was not exactly looking for something either. I have also had anesthesia with propoful drips which contains soybean oil and was fine during the procedure. I guess I am just wondering if this kind of allergy can get more severe in time? I have read things about anaphylaxis shock but I think that is also very rare with soy.

Thanks.

PS-- Does anyone know if you get the gluten levels under control and most of the damage that has been done to your body as well as avoid soy and whatever other allergies for awhile, will the body eventually accept soy again? I know gluten is a definite no no,but what about the allergens. Is it possible that maybe people with gluten intolerance are too busy trying to get rid of the gluten that they can no longer digest soy, milk, etc.?

darlindeb25 Collaborator

Glutens used to give me diarrhea, severe diarrhea. Soy, corn, and rice cause me to be constipated, just as severely as gluten caused diarrhea. Otherwise, they all cause skin rashes, joint problems, neurological problems...an overall feeling of fatigue.

Some people can eventually go back to grains, other than glutens. I haven't been able too. I have been soy free for 5 yrs, corn free 4 1/2 yrs, and all other grains free for 5 months. I do not see me going back to grains, ever!

By the way, some soy free people can have soy oil and lecithin. They say the bad protein is heated out of the oil, I can't have oil. I can tolerate small amounts of soy lecithin.

They tell us that once we have gluten out of our systems, then the other intolerance's are easier to notice. Gluten takes over our lives, once it's gone, other intolerance's says, "My turn, my turn!"

It's true that many celiac's have to give up dairy in the beginning, and eventually can go back. Yet, that isn't true of everyone either, some people will be lactose intolerant forever too. I never had to give up dairy. I read Dr. D'Adamo's book, "Eat Right For Your Blood Type" and that's when I found I was soy intolerant. He says blood type A's should not have dairy, so I started using soy milk (8th Continent), soy flour, and tofu. That's when I found I was soy intolerant too. So this blood type A went back to dairy and gave his book away.

Nothing is written in ink, some things can be erased from our lives, some can't. You may be able to go back to soy one day, and if you do, your body will let you know if it accepts it or not!

smiles Rookie

Thanks Darlindeb! I don't know what you are eating. Corn, soy, rice & gluten are in everything! :(

I have been reading a lot on this forum the past few days and it is so depressing. It seems people start out finding they have a gluten intolerance/celiac and then they find out they have so many more allergies... It is such a process to find out all this stuff. I guess it is best to rotates foods to try and prevent allergies from happening. I purchased a book on rotating foods, but am still waiting for it to come in the mail.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Oh Wow, Deb, I am so happy to hear you say you are not going back to grains. You must be feeling a lot better.

I am also a double DQ1 no grains (mostly) person!!! & yes, I think it makes you have more energy & just be all around healthier.

Smiles, you have a DQ1-0501. You might want to search the topics on here about that gene. & you can also google it. It is part of a DQ2 gene. My sister has that gene & had positive blood work, positive Enterolab, she also has another DQ1 gene. My whole sick family is almost all double DQ1. I also have a friend that has DQ1-0501 & she had a positive biobsy, positive Enterolab & has early onset osteoporosis (pre gluten dx) & another DQ1 gene.

know that this information is recent & that there is a lot that the medical people have not discovered yet. Thank goodness there is word of mouth from us that are double DQ1 to warn people to stay away from gluten. Very old hat to think that you just have to have a DQ2 or a DQ8. You can be free of those genes & still have major complications & a pitiful life with an early death from some complication...

You will need to be very serious about staying gluten free.

nora-n Rookie

Yes, one can have half genes and other genes

Open Original Shared Link

DR13 =DQ6=DQ1

Open Original Shared Link

Why do they not say DQ1?

Dr. Hadjivassiliou has reported that 20% oof his gluten ataxia patietns are DQ1, but he has been attacked by other celiac experts. maybe they do not want to admit he is rifht, and they just avoid calling DQ1 for DQ1 by writing DR13....

About 0501, I have this one: Open Original Shared Link but they found no DQ6 in this sample of over 1000 patients, but some DQ5 which is DQA1 *01 and DQB1*05.

But, I have seen DQ6 officially diagnosed celiac other places too.

Here are some DQB1 *06 : Open Original Shared Link and I have even seen others in other countries in pubmed.

smiles Rookie

Thanks GFPapeerdoll! I can see I have a lot of learning and research to do. This is all starting to make sense with everything I have been going through my entire life. I have never been coordinated (can't dance for anything- like Elaine on Seinfeld) and have little proprioception and believe it is probably related. I thought I was just spastic. Anyway, I came across another one of your posts recommending the book "celiac disease: a hidden epidemic" and I just purchased it. If anyone else has any good books I would love to hear about them.

gfpaperdoll Rookie

I also like the book "Dangerous Grains". "Good Calories Bad Calories" by Gary Taubes is a must read for everyone, not particularly a gluten-free book, but it shows you that grains are not good for anyone, & how the "studies" in the U S have been skewed because of economic & political issues, not to mention peer pressure. It is difficult to be a doctor & "go against the grain", pun intended!! :)

I also like the book "Eat Right for Your Blood Type" for us DQ1 ers, because it will help you sleuth out any other food intolerances. I would be surprised if any one of us (double DQ1 people) do not have other food issues. I took that book & crossed off everything that I knew that I could not eat - & then considered what was left. I got some very good results with just altering my diet a tiny amount... Of course I just crossed out any reference to grains & dairy - I cannot really remember if that book recommends dairy or grains...

for a refresher in nutrition there is a great book called "Super Foods", there again I just disregarded the info on grains & dairy...

I read a bunch of books, took what fit me from each one & ended up with a healthy satisfying diet.

smiles Rookie

Thanks so much Gfpaperdoll. I actually went to Barnes and Noble this morning and purchased "Dangerous Grains" and started to read some of it- good book. "Good Calories Bad Calories" sounds like a very interesting book. I will definitely have to get that one and check out the others.

Wow- I guess you are avoiding all grains such as corn and rice? This is all so frustrating, but it is comforting to know you have had successful results by eliminating your allergens. :) I am planning to get a food allergy test soon as believe I probably have many others too.

ShayFL Enthusiast

I too had to ditch the grains. Just not working for me after I went gluten-free. The only grain I eat now is maybe twice a month I have a few Tlb of amaranth flour to make a roux for a cream sauce me and my daughter like with clams. That is it!!

At first I thought cutting out grains would be hard and I would feel deprived. But that didnt happen. I just felt BETTER. :)

Even before going gluten-free, I noticed that grains made my blood sugar spike. Not good.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.