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beachbirdie

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  1. Hi Sarah, and welcome to the forum!

     

    You have come to the right place for information and friendly support!  Hopefully your doctor will move quickly to get you tested.

     

    This forum is full of people who have struggled for YEARS with misdiagnoses before finally figuring out celiac was the cause of their problems.  Your short gluten-free trial has already told you a lot, you feel better when you do not eat it!

     

    But please, as EmiPark said, keep eating gluten while you are in the midst of testing.  You won't produce antibodies if you are not eating gluten, and the antibody level can drop quickly when you stop.

     

    Keep us posted how things go with your doc, and keep asking questions!  Be sure she tests for these things:

     

    Total Serum IgA

    Deamidated Gliadin Peptides - (2 tests... DGP IgA and DGP IgG)

    Endomysial Antibodies (anti-EMA)

    Tissue Transglutaminase antibodies (IgA is usual version, I'd ask for IgG too)

     

     

     

     


  2. shadowicewolf gave you good advice.  The IgG will be accurate and would be the only way to tell you if you do have celiac, in the possibility of a negative biopsy.  You may be non-celiac gluten intolerant, that is a valid condition that would need you to be gluten free. 

     

    You have it right about "IBS".  This forum is FULL of people who were told they had IBS, only to find later they actually had celiac (or NCGI).

     

    The best way to get the answer; a gluten-free diet!  It does not require a prescription! 


  3. Hi all.  New here.  I've been reading for almost a year and been on the path to getting a diagnosis.  Like everyone else my story is pretty long, and have been dealing with digestive issues since I was a child (over 30 years).  I was hospitalized for a couple of weeks when I was 10 because of it.  Anyway, over the years I've pretty much been considered a terrible hypocondriac.  But what else can you do but think you've got "everything" when you don't feel well and you can't get answers anywhere?

     

    I stumbled onto this "celiac thing" in April last year.  The pieces just fit too well that it was freaky.  It sure would explain a heck of a lot of stuff in my family.  When I sent the info and several links to my sister she answered "Oh my God!, that's us!".

     

    So, although it took me forever to get a GI to see me (not a simple process here), he actually listened to me and tested me for Celiac, although he really didn't think that's what it was.  I'm glad he at least humoured me.  I don't know what specific test he did, but it came back negative. BUT that was useless because he also tested my overall IGA and told me that I had very low results and that I am IGA deficient.  Therefore, the test was useless.  I also came back very low ferritin (although he said I wasn't anemic).  As a result, he has decided to go ahead and do a colonoscopy and gastroscopy (is this the same as endoscopy?) and he will biopsy my small intestine at the same time.  He still thinks I'm not celiac, but he says he might as well do the biopsy since he's there. This is in a couple of weeks. 

     

    Here's my questions/problems:  I am so upset about being IGA deficient!  I feel this is going to make it so much harder to be properly diagnosed.  If the biopsy is negative, I'm going to be so upset because what other means is there for someone like me to get the diagnosis otherwise?  Does IGA deficiency negate the possibility of accurate testing across the board?  I see so many tests mentioned and I have no idea which ones require IGA.  But it does seem that the most accurate ones require IGA.  Can someone clear this up for me? Are there other tests I can request? Also, I've had a weird rash on my shins that comes and goes.  The derm told me it was psoriasis, but my hubby (and his whole family) suffer from psoriasis, it looks nothing like that.  Can you have DH if you are IGA deficient?  The rash usually appears on both legs simutaneously as well as my wrists and base of my back.  This time it's only on my left leg and isn't as severe, so I'm doubting again.

     

    Anyway, thanks in advance for any help and info.

    Welcome to the forum, nosy parker.

     

    Your doc should do some more blood testing...you need to get the TtG IgG, Deamidated Gliadin Peptides (IgG and IgA are both usually done even if you are IgA deficient) and you can even get an anti-EMA IgG version but that is uncommon and the doc would have to make a point to order it specially.

     

    Your low IgA doesn't negate the possibility of accurate testing, the doctor just needs to order the appropriate tests.

     

    A colonoscopy won't tell him anything about celiac, though it will rule out cancer and inflammatory bowel diseases like Crohn's.  You DO need to make sure he does a good number of samples from an endoscopy that is done through the stomach (from the "top" rather than the "bottom").  If he doesn't take enough samples, it is a wasted effort.

     

    As for your rash, that can be biopsied to detect dermatitis herpetiformis.  The biopsy needs to be done on HEALTHY skin right next to the rash, not on the rash itself.  If you test positive for DH, you don't need anymore testing.


  4. Yes, it is normal to have other intolerances (though not everyone has them).  Some of them might go away after you have healed.  That is why the experienced folks here
    recommend doing a "whole food" diet for a while, before trying to replace your favorite gluten-y foods with gluten free versions.

     

    Soy, corn, dairy are all common contributors to distress.  Some people are intolerant of xanthan gum, which is used in a LOT of
    products as a thickener/stabilizer; it is found in ice creams, salad dressings, baked goods, and more.

     

    Best to stick with the simple; fresh meats/fish, fresh fruits and vegetables, basic flavorings...olive oil and butter go a long way, as do fresh herbs.

     

    You might find a digestive enzyme helpful.

     

    I've seen some of your threads and several have recommended an informational thread for you...if you haven't gone to read it yet, IrishHeart's Newbie 101 thread

    is the greatest information source all in one place on this site.  She has amassed a wealth of information, she has a LOT of experience with autoimmune diseases.  She also happens to be one of the really great people around here!


  5. It's not as common to be diagnosed with celiac if only the Ttg IgG is positive.  Especially with negative biopsy.  Your doc is good to have you go gluten free anyway.

     

    Did you get a copy of your biopsy report?  Do you know how many samples they took?  If they took only a small sampling, they might have missed damage.

     

    Also, did your doc make sure to rule out other conditions that might also raise the IgG...like Crohn's disease and other autoimmune conditions.

     

    Just to be sure.  Hopefully the diet will help and you'll be on your way to feeling great!


  6. I don't want you to be frightened but since you asked the immunoelectrophoresis is used to look for a number of conditions some of which are more benign than others.  Your doc is being more proactive than most, and looking to make sure there is not something serious that might escape notice.  Here is a run-down from Healthline:

     

    Why Is the Test Ordered?

     

    To Confirm a Diagnosis

     

    The immunoelectrophoresis-serum (IEP-serum) test is ordered to help
    diagnose an underlying health condition. Your doctor may order the test
    if abnormal results have been detected through other laboratory tests.
    The IEP-serum test may be ordered if you show symptoms of:

     

    • a chronic infection

    • an autoimmune disease

    • a protein-losing disease, such as enteropathy (a disease of the intestines) or inflammatory bowel disease

    • Waldenström’s macroglobulinemia

     

    The test can be used to rule out conditions such as leukemia and multiple myeloma. Symptoms of these disorders include:

     

    • weakness and fatigue

    • weight loss

    • broken bones

    • recurrent infections

    • weakness in the legs

    • nausea/vomiting


  7. I think "they" say that a slice or two of bread, or a good  serving of crackers a day would be sufficient. 

     

    I know it's crazy to keep yourself sick in order to get answers, but unfortunately that's what it takes!

     

    If you have the will to keep to a gluten free diet for life, you could accept the doctor's diagnosis from blood work (a lot of docs won't diagnose on blood work alone!) and skip the endoscopy.

     

    You'll get mixed answers if you ask whether you should do the scope or not, some will say "yes" some will say "why bother".  In part, a positive scope can solidify your determination to be disciplined about gluten consumption...I would get a copy of my blood tests and see exactly what they tested.  If they did a full panel, and several tests were positive, that is a pretty strong indication that the celiac diagnosis is correct.


  8. Please do not stop eating gluten until all your testing is done!  If you stop eating before an endoscopy, you will start to heal and they won't see damage.  You will then be told you do NOT have celiac when in fact you likely do.

     

    Others know more about the endoscopy, but you do need to ask how many samples they plan to take, and negotiate to make sure they take enough.  Sometimes doctors do only a very few...2 or 3...and that is NOT ENOUGH.  Hopefully others will be along who have more experience with that part of the testing.

     

    Do you know which bloodwork they did?  It is very helpful if you can get copies of the results so you know exactly what was tested, and what your levels are.  That way, if they did skimpy testing, you can ask for a more complete panel.  Sometimes they only test one part of the celiac spectrum.

     

    Oh...forgive my rudeness...welcome to the forum!  I love your avatar...is that you?  Where was it taken?


  9. I have completely given up grains, and it wasn't until I did so that I started to feel really good.  A nice side effect is that I also lost 35 pounds, without any effort or thought whatsoever.  On top of that, I am guessing my generalized inflammation has gone way down; I no longer experience the swelling/fluid retention I used to have.  I used to wake up in the morning with slits for eyes, my face was so puffy.  NO MORE!

     

    I am sort of paleo/primal though I very occasionally indulge in a crunchy treat made from rice flour.  I also have eaten ( not more than twice in a month) regular potato, though I'm finding that sweet potato fries and sweet potato hash browns are VERY MUCH to my liking!  I used to get horrible carb cravings in the mid-afternoon and would raid the kitchen scrounging all I could find.  I no longer experience this in ANY WAY!  I was also a sugar addict, and since giving up refined sugars I no longer crave sweets.

     

    I also eat yogurt, but not store-bought. I make it myself from local, organic milk.

     

    All in all, I am a VERY happy camper with this diet.


  10. I use a pressure cooker and have for many, many years.  One of the best places to read about them and gain confidence, as well as get ideas for many ways to use them is Miss Vickie's site.

     

    As for making text links, first type your text in the reply window...then, highlight it by putting the cursor in front of the text and dragging the mouse across the text you want linked.  THEN go to the little link tool at the top of the message screen.  If your message screen does not show the tools, there should be a button to push that says "more reply options".  Click that and it should reveal the tools you need.

     

    I don't recommend aluminum, I prefer the stainless steel because the aluminum pits if you do a lot of cooking with acidic foods such as tomato.  It also leaches aluminum into your food, which supposedly damages our brains (connected with Alzheimer's).

     

    I have an older rocker-weight pressure cooker, I also just got one of the fancier ones that doesn't have rocker weight.  I don't have a lot of experience with the newer one, the metal on the pan split before I got much use out of it.  For this reason I would hesitate recommending the Spanish-made Fagor, though they did honor their warranty and replace the pot.  My confidence is low, however, as my husband looked at the metal and said it has what look like flaws in forging and the new one will probably split too. 

     

    Pressure cooking does not have to be frightening!  One needs to remember a couple of rules:  1)  make sure you have adequate liquid in the cooker, and, 2) don't leave home with your pressure cooker on the stove.  Set your timer so you can get back to your pan before all the liquid evaporates.  It is when a pressure cooker run dry that it is dangerous, and rocker-weights lose a lot more moisture through their vents!  Pressure cooker recipes take this into account, so don't be nervous when following recipes written for pressure cookers.

     

    You will need to spend a little more time learning how to get a rocker-weight cooker set at right pressure if you have an electric stove, once you get it down it will be faster!  Gas stove is easy, when you turn the flame down the pressure drops pretty quick too!

     

    Anyway, I love my pressure cookers and hope you will love yours!


  11. Hi all,

    I will also post this in the "supersensitive" section, but could use some help brainstorming, my daughter was diagnosed in 2009 (she was 14 months old) and is now 3.5 years old. In that time, her ttg levels have only once come below the highest level (and even then it was only down to 135). The odd part is that she does not seem to have any symptoms since going gluten free. She has normal bowel movements, non vomiting, not complaining of stomach pain, is growing normally, and has "a terrific looking vitamin panel" according to her GI. We have checked all sources of cross contamination at home and school, have a gluten-free house, gluten-free babysitter (when she is here), never eat out and I make all of her foods. They are suggesting she try a no-processed foods diet next, but I'm wondering if any of you have any other ideas. Im willing to do what i need to do, but it is also getting hard to get my picky eater to eat much of anything!! Is she super sensitive without symptoms? Is there something about the test that is less valid in such a young kid? Any ideas are welcome!!!

    Thanks for any help!

    Which TtG is elevated, IgA or IgG?  Have the doctors considered inflammatory conditions outside of celiac?  Sometimes TtG is reflective of things NOT celiac...it can be elevated in thyroid and liver conditions for example, as well as diseases like Crohn's. 

     

    Have you tried eliminating dairy?  Soy? 

     

    I would definitely think about going on a GAPS or SCD type diet...dropping processed foods and dropping grains/sugars altogether might be worth a try.


  12. Well, I haven't been on the forum long but just to see others experiencing conditions and symptoms (autoimmune) like myself has helped me and my family out so much. It is great to have a place to go and feel you aren't crazy!

    My 12 year old son has recently started symptoms of severe depression - extreme self doubt and insecurities on self worth, an eye twitch/rapid blink, and isolating himself. Knowing the benefits of removing gluten (and other foods) from my diet and my youngest son's diet (age three) that ten days ago I removed gluten from his diet and today his eye twitch is 90% gone, his mood is bright, talking, interacting, appetite has returned. I did bring him to the GP this week and asked him to please test for Celiac (as I wasn't tested myself) and got the "No, he has no intestinal issues". I didn't tell the doctor the extent of how bad his depression got as I know medication would be the first step and antidepressants in children terrifies me. I, at least got him to do a blood test and sure enough he is anemic. How does a 12 year boy get anemia? We eat beef/lamb 3-5 times/week, eat a lot of greens, he loves pumpkin seeds and eat a lot of them, raisins, fortified cereals, takes a multi vitamin. That is plenty of iron for anyone but given that gluten is involved I totally believe it is an intestinal issue of malabsorption. His doctor is against me changing his diet but just adding iron supplements.

    I am mostly writing this to anyone else dealing with such a thing is to not doubt their intuition. I wish I never did because I believed in what doctors where telling me about myself well, I won't do it for my son(s). Thanks for a having a forum that isn't just the standard but opens up to so many other symptoms that really happens with this condition.

     

     

    Your doc wouldn't test for celiac?  Sheesh.  There are a LOT of celiacs who do NOT HAVE intestinal symptoms, but they are definitely celiac and definitely suffering from it nutritionally.  If your doc is fighting you on the diet changes that are obviously helping your son, I think I might consider changing doctors.  You want someone in your corner, not someone you have to do battle with all the time.


  13. ok, I looked through my papers and I do have the biopsy result. I'm not sure how I missed it, I guess I was expecting all the samples to be listed and they weren't. Turns out, 4 samples were taken. I requested the biopsy for Celiac because I have Hashimoto's(which I know is in the risk group for Celiac) and heartburn/ very severe reflux. I had to have an endoscopy done anyway because i Had a stricture in my esophagus because of the reflux.

    The biopsy for celiac reads as this: Small intestine, unspecified, biopsy. Duodenal mucosa with intact villous architecture and no significant abnormality.

    All of the blood test results were pretty low , I"ll go back and try and edit my first post but I know these results are negative...I do understand that it's possible my IgA tests *could* be positive, but with the deficient total serum IgA, they'lll never show up positive. I did read on Dr. Rodney Ford's site that one should get the anti gliadin test if everythingone is IgA deficient...it's the test that the deamidated gliadin test replaced(hope I got that right) should I request it?

    Well, you could ask for the gliadin antibodies IgG, and you could also beg for the anti-EMA IgG version (yes, there actually IS one!).  But, if you are willing and motivated to go with a gluten-free lifestyle, then you could stop here and be non-celiac gluten-intolerant.  NCGI is NOT a "lesser stepchild", it is a real condition.  And in order to feel well, it is important to be as gluten free as an officially diagnosed celiac.

     

    Did you by chance get any of the genetics done?


  14. Yes, it would be worth getting tested for celiac. If my son were autistic, I'd get him tested too. Oh wait...my son is an Aspie...and he does have celiac!

    You don't need a gastroenterologist, a good family doctor can initiate the testing. What you need is a doctor who understands celiac and is aware of its many presentations, one who knows the full scale of tests that need doing:

    Deamidated gliadin peptides IgA (DGP IgA)

    Deamidated gliadin peptides IgG (DGP IgG)

    Tissue Transglutaminase IgA (TtG IgA)

    Tissue Transglutaminase IgG (TtG IgG)

    anti-endomysial antibodies (anti-EMA)

    TOTAL SERUM IgA (celiacs are often insufficient in this, and if you are insufficient ALL the IgA versions of tests are invalid...that's the only reason for this test, but it is IMPORTANT)

    While you are waiting, you might want to be exploring some ways to change your diet. Paleo, primal, SCD, GAPS, all can be helpful though a little more restrictive than simply being gluten-free. Sounds like you might benefit greatly from a change, especially one that drops the starches and sugars. I know this is controversial, but some kids with autism have been seen to improve on a gluten-free diet. You might go into the topic for parents of celiac kids, or the "related disdorders" There are some discussions around here on the forum about it, here are a couple...you can use the search-box at the top of the screen to find more.

    http://www.celiac.co...ism#entry851074

    http://www.celiac.co...ge__hl__+autism

    http://www.celiac.co... autism rising

    Ahh...nvsmom...beat me to it, LOL! :P


  15. I'm looking for a doctor who specializes in food allergies. Gluten intolerance runs in my family along with many other food intolerances. My daughter also has mild autism and we're looking for someone to guide us in her nutritional needs. I've been seeing a naturopathic doctor, but he's expensive and requires me to pay for another doctor's visit to get any test results. Is that normal for naturopaths?

    What city are you close to? I'm in the central Willamette Valley, I like my doctor at Samaritan Heartspring. Their specialty is "integrative medicine", they bring the best of both medical worlds together. They are expensive too, but if you have insurance all the major carriers pay them.


  16. I had an endoscopy back in October and am just now got the results mailed to me....I am disappointed that I was only sent the blood test results and not the biopsy results....I have an appt. at the beginning of March so will make sure I get those copies.

    Anyway, everything looks negative, but total serum IgA was marked low. hm. mine is 76 and the range is 91-414

    Here is what was tested, please tell me if I need other testing as I know low IgA can make the tests false negative

    Deamidated Gliadin Abs, IgA

    Deamidated Gliadin Abs, IgG

    T-Transglutaminase(tTG)IgA

    Tissue Transglutaminase(tTG) IgG

    Endomysial Antibody IgA(this one didn't give a range and just said negative)

    Immunoglobulin A, Qn, serum(which I guess is the total serum IgA??)

    Thank you for looking! :)

    Dumb questions. Had you been eating gluten before you got your testing? I know you posted other topics, but I haven't been around for a while and can't remember what I've read!

    Were you having symptoms? (Edited to answer my own dumb question...) Ahh, yes, I went to find your older posts and see you were eating gluten!

    Next dumb question...do you have the actual numbers for the other blood tests? I'll be interested to hear what the biopsy report shows, since they had told you they were only going to take two samples. Do you know how many they actually did?


  17. I had my TSH tested recently. Came out to 2.6 and I keep reading that it should be close to 1. I pointed this out to my GI doc, that new studies say anything over 2 is hypothyroid. He repeated that it's normal and said our lab uses 4 or more as the standard.

    I know very little about thyroid stuff so didn't feel I could argue with him.

    What I want to know is, if I am slightly hypothyroid, what is the treatment? Can I deal with it through diet? Do I really need to take synthetic thyroid, or can I just live with it? What symptoms should I watch for?

    Sorry for so many questions, this is new to me!

    PS. No, he didn't order any other thyroid-related tests, just TSH. Insurance reasons, I guess.

    TSH is the first-line test they use to see if anything is out of whack with your thyroid. What they should be doing is TSH, Free T3 and Free T4. TSH is a measure of the pituitary hormone that gets secreted for the purpose of telling the thyroid gland to make thyroid hormone. As Takala said, your hormones can swing around quite a bit if you have autoimmune thyroid. Your TSH can swing around a good bit even if you DON'T have autoimmune thyroid.

    You have a TSH number that would concern me though not alarm me (not a medical professional, just an experienced thyroid patient!).

    If this doc won't test your thyroid hormones, find one who will. There are also places online you can order your own labs if you really want to get that info and can't get a doc on board, and they use the same laboratories your doc would use (such as LabCorp) so your doc can't say they are suspect.


  18. Thank you Ill be sure to ask my other Dr (which is going to be the one doing the oscopy test) if he can do the endo as well. The Dr I just went to last night said it look unusual that my IGA were high but with such low IGG (36/12), can someone explain what he meant? It was something like, if IGA is high, your body would also create IGG. Just really confused, all in all I really feel like its celiac, the only time I ever felt the peak of the symptoms (D, rash, pale, malaise) was when I would eat bread (subway, hot pockets, pot pies)

    Thanks again

    You won't necessarily have ALL the types of antibodies elevated. The one you DO have elevated is a very good test, the deamidated gliadin peptides. Some docs WILL diagnose on that alone.

    Lots of celiacs here who test negative on ALL the bloods, but still have positive biopsy, and the other way around.

    As ravenwoodglass said, you need an endoscopy...not colonoscopy.

    good luck.


  19. i got more testing done including the ones suggested here. these are the results:

    thyroglobulin antibodies <20 (normal)

    thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

    TSH (normal)

    T4, free (normal)

    T3, Total 75 ng/dl (abnormal, range 76-181

    vitamin D, Total 26 (abnormal, range 30-100)

    I AM SO CONFUSED!!!!!!!!

    Would you be able to post the values of your test results, not just whether they were "normal"?

    I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells can use. Though, if your TOTAL is low, it is guaranteed your FREE is low as well since the free hormone is only a fraction of the total.

    You might beg for an entirely new set of thyroid labs, which should include:

    Free T3

    Free T4

    Anti-Thyroid Peroxidase Antibodies (anti-TPO)

    TSH

    REVERSE T3

    So...I'd say you better be getting with a good doc (and not necessarily and endocrinologist) to discuss this stuff, because on the surface of everything your thyroid isn't serving you well even if your T4 looks normal. The actual levels would help with better understanding. It would appear that you might not be converting your T4 to T3.

    That is how thyroid function works...the pituitary stimulates the thyroid with TSH (thyroid stimulating hormone). The thyroid should respond by making thyroid hormone, the bulk of it in the form of T4. As the body needs it, the T4 is converted to T3, some bound to carrier proteins (thyroglobulin) and some not. The cells have receptors that recognize the hormone, and pick up as much of the FREE T3 as they need in order to carry out their metabolic functions.

    With low T3, you are functionally hypothyroid and WILL have thyroid symptoms. But you will need a lot of tenacity and good luck to get a doc to look beyond your TSH and T4. Thyroid is VERY badly treated by most mainstream medical professionals.

    Also, though your T3 and thyroglobulin levels are off, it doesn't necessarily mean the thyroid itself is failing...it could also be pituitary. I don't want to scare you because your elevation is so slight, but increased thyroglobulin can be an indicator of a thyroid cancer though if there is a disease going on, it would still more likely be Hashi's/Graves or other form of thyroiditis. You can poke around labtestsonline.org to read about individual tests.

    Is it acceptable to post links to other sites? The thyroid forums at about.com and at Delphi.com start have some wonderful, friendly people who have lots of experience and can offer plenty of support and guidance. There are some thyroid-savvy people here too, just don't know if they'll find their way to this topic!

    Bottom line, you have symptoms that are explainable by even this sketchy lab report and you need someone who can better investigate this for you.


  20. No, hon, that was not my link that was posted (I believe cavernio posted to those studies).I just added the discussion that occured as a result (from an older thread).

    The thread I posted the link to states the opposite--it is not a "gluten cross-reaction".

    I wanted you to be encouraged by what the science had to say, not to make you overly concerned. I guessed that was a bad idea. sorry :(

    It's only ONE study anyway.

    I do NOT believe corn damages celiac guts like wheat gluten does.

    I DO believe you are having digestive issues, yes--for the reasons I have previously stated.

    In any case, do not eat it if it bothers you. Could be difficult for you to digest right now.

    Hang in there!

    I don't have the citations yet, but my DIL recently shared with me that she saw some studies pointing not to gut damage from non-gluten grains, but pointing to some evidence that grains like rice, corn, and others have enough similarity to gluten that they fool receptors and cause an increase in the body's autoimmune responses. She's out of town right now, I'll get the citations from her at some point. She is a graduate in a science field and I trust her evaluation of the validity of studies.

    Just throwing that out for thought at this point!