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Ziva

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  1. Sjogren's,,do you have dry mouth, eyes, throat?

    Don't let too much info all at once over-whelm you as this can cause some depression.. You will figure it all out but it does take lots & of time.. So work on things that are naturally gluten-free ie: naked meats, veggies, fish, fruits. NO coatings, rubs, marinades, seasoning, McCormick's clearly labels so you can add your own spices at first...

    I just thought my eyes got tired toward the end of the day because I wear contacts. Maybe still the case. I don't notice my throat or mouth being dry. I'm not going to think about it. :) I think I have the food down pretty good. We don't eat alot of processed foods and usually have a meat, veggie and salad for dinner and I take leftovers for lunch. I do think I'm on information overload!!

    I appreciate all the info I have been given.


  2. You are weirder than me. I think.

    I'm curious - did your daughter get "common" Celiac genes from her father? You can see his genes by comparing the two DNA tests (or half of his). Half of each gene is from you - the other half is from him.

    I always thought I was a little weird :)

    We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.


  3. Quess I don't know how to do the mutli quote, yet!

    Thanks for the reply. Are you saying that the recent thyroid tests I had done are not enough to rule out Hashimot's? At least for right now.

    My test through Quest said: "The patient does not have the HLA-DQ varients associated with Celiac Desease"

    As I work on getting my other daughter tested, I might be a little smarter. My TtG IgA was <3. They did not do the Ttg IgG in my blood work. My IgA, quant was "normal" and my antigliadin ab, IgA was 13 - high (11-17 equivocal). My daughter's TtG IgG was 9.3 - high (>9 pos) and it was the only positive she received. They did not run a full panel before she went gluten free. My mistake, when the GI said "classic Celiac" after our initial visit and biopsy, before the pathologist's report, I figured I didn't need to request additional celiac bloodwork. According to our GI docs neither of us have Celiac.


  4. Did I miss it in the thread?- was your daughter biopsied yet? If not, get one asap and then get her on the diet as well!

    She was biopsied and he again said "classic Celiac" as she was recovering from endo, but would have to see what biopsy showed. She went gluten free and we went for a 3 week follow up after endoscopy and the GI doc did a flip flop to No Celiac because biopsy was "normal". He went with IBS and said she could eat carbohydrate light. She feels better although not too happy about being gluten free at 21, but she is willing to stay gluten free. I'm so glad I've been reading on this forum, learned how much doctors don't really know and not to listen to all they say! Her doctor is at least willing to entertain the idea of staying off gluten if it makes her feel better.


  5. I am relatively new to Celiac and am trying to figure out what this all means for me also. I didn't know there was anything wrong with me until Dec. when a GI doc mentioned anemia during a routine colonoscopy at 50. As I have read more about Celiac, I can say I can identify with some symptoms and defiantly have some absorption issues resulting in anemia, Vit D and recently told of B12. On Wedn. I was put on weekly B12 shots for 24 weeks. I thought weekly seems a little different than what I heard others say, but I'm going to give it a try. My husband was put on the same amount but once a month. Different doctor than mine. From what I have read, it seems the shots are the best way to go because of the absorption issues with people with Celiac. I'm sure all people are different, but I had the impression that once off gluten and your intestines heal, your body would then absorb the nutrients and you wouldn't have to stay on the shots. As I said, I am new and learning as I go.

    Good luck to you


  6. I'm not sure if I can change the heading to something like...Been around for a short time, and still need input from those who have been around awhile!

    I had follow up appt with hematologist that believes I have Celiac. Even though GI says no. I had blood drawn the week before so he had results. The thyroid tests were:

    Doctor said these are fine.

    T3 uptake 30 - normal (22.0 -35)

    Thyroxine (T4)- 7.1 -normal (4.5 - 12.0)

    Free thyroxine index 2.1 - normal (1.4-3.8)

    TSH 1.27 - normal (.40-4.5)

    There is also a T3, free, pg/Dl 3.1 - normal (2.3-4.2)

    Can I have some input on what this might mean for me? If I'm gluten free will the symptoms get worse or does the progression stop?

    Sjogren's antibodies (SSB)1.4 Pos - abnormal

    Sjogren's antibodies (SSA)<1.0 Neg - normal

    ANA Cascading reflex interpretation - This finding suggests Sjogren's syndrome.

    Anti-nuclear ab titer 1:40 - high (1:40 neg, 1:40-1:80 Low antibody level, >1:80 Elevated antibody)

    Found out I'm also low on B12 and am going to start weekly B12 injections for 6 mths. Is weekly normal?

    Any input is helpful. Thanks


  7. On Friday, I went with my 21 y/o daughter to her 3 week after endoscopy follow up appt. The doctor totally changed his diagnosis from "classic Celiac" after our initial appt and endoscoy findings to No to Celiac because "the Golden Standard" of biopsy was not met. He now says the ttg IgG result that was 9.3 was not really high. (<6 neg, 6-9 - weak positive and >9 positive) Only test she showed high. Looking back, I don't see where they did the IgA quantity. Can I say we are VERY frustrated! He didn't seem to take into account that she seems to feel better 3 weeks gluten free. No ear infections, decreased bowel problems, more regular bm without added fiber to name a few things. Also had no explaination for her anemia. He is now going with IBS and wants her to take lubiprostone / amitiza and do a stool test for blood. Also said she should "modify" her carbs but doesn't have to eliminate them. It looks like that medication could have some unpleasant side effects! Anyone else take that medication?

    Any input?

    I'm thinking she is going to skip the medication for now and continue eating gluten free. Right? Do the poop test for blood. Is 2 months eating gluten free long enough to see changes in blood work for anemia?

    So frustrating! Good luck to the other posters on this thread regarding your results. Seems like you really have to go with how you react to foods because you may not get confirmation from the doctors.


  8. My daughter had her endoscopy & biopsy done and the GI said definatly Celiac. He said he would send off the biopsies and let us know if they show something different. What he said seems to go along with what I have read on this forum. I think she may have a doc who knows what he is doing! We also talked about the genetic marker test, hopefully I put that right. When I told him mine was negative and done through Quest, his comment was "there you go" and would prefer Prometheus.

    I appreciate any input I have received since this is all new to me and I need to know what to request from my doctor. On to the dumb question... several have said I need more thyroid tests than just TSH. Confused why. I did some reading and I don't see the symptoms of thyroid problems. With Celiac being an autoimmune, wouldn't that be why the ANA is positive? I can say all I have are the above test results, some trouble sleeping but not all the time, floating poo, but definatly better now off gluten, heart palpatations at times but not all the time, hot flashes sometimes. My hair, nails, energy, weight, skin, sensitivity to hot / cold are all normal. What am I missing so I have something to go to the doc with.? In 2011 - TSH was 1.80 miu/l - no reference range and in 2012 it was 2.25 with "normal" being .47 - 5.01 uu/ml.

    Thanks again :)


  9. Thanks for the replies.

    The only test for thyroid was the TSH. I will request more thyroid blood work @ my appt. the 1st of May.

    I am a bit frustrated with my doctors. I have showed anemia for several years on my blood work but it didn't raise any flags with my pcp other than telling me to take some iron. I thought he knew what he was doing and I didn't know any better! My GI doctor has dismissed me to come back in 10 yrs for a colonoscopy. Believe I will find another one by then. The hematologist is the one who says I have Celiac. I called his office yesterday, to ask about thyroid test and h. plori. He wants me to take the 3 antibiotics for the h. pylori. Wish they would have called me and wanted me to do something rather than me calling them. :)

    Thanks again


  10. I still have a few questions and would apprciate any input. Look at previous post for other tests results.

    1. If the only test I showed any increased number to was Antiglaiden ab, IgA at 13 (11-17 equivocal) is that enough to say Celiac? Neg on biopsy and neg on genetic marker. Anemic and Vit D insufficiency. See above.

    2. My daughter was tested and the test done was Gliadin , IgG & IgA - normal and TTG IgA normal and TTG IgG High at 9.3 (<6 neg, 6-9 week pos, and >9 positive). Biopsy scheduled. Should I request more blood work or is the one area enough to say Celiac? Reading up on Celiac, she has more outward symptoms than me. Attributed some problems to Asthma and diagnosed with IBS this summer. Because she is young and I want to make sure before she spends her life gluten free and we can still do more blood tests.

    3. What does it mean when H. pyloria, IgM is abnormal?

    Thanks


  11. I get palpitations (but not fast enough to call it tachycardia) whenever I eat cane sugar, which is one of my diagnosed (IgG mediated) allergens. I also get a little nauseaus when I eat cane sugar. All my other allergens (gluten, dairy, soy, egg, vanill and nutmeg) cause gut pain, bloating and diarrhea or constipation. Cane sugar is the only one that causes palpitations. I can eat any other kind of natural sweetener (stevia, maple syrup, agave, beet sugar, honey, etc.) but nothing derived from cane sugar (molasses, sucanat, splenda, brown sugar) without getting those palpitations for at least 48 hours after ingestion. My ND says he's seen several people with cane sugar allergy as well as me.

    I spent the day wondering what was wrong with me. I've had heart palputations before but today had them off and on almost all day which was not "normal" and very unsettling. I got on here to see what others had to say. I'm new at eating gluten free and am taking iron and Vit D. The iron is causing some issues so I was taking Citrucel, says it's gluten free, and 60 calories per tablespoon. Tried the sugar free which contains aspartame. Didn't think about it containing the same thing as Crystal Light which I also react to but not as bad as today. Reading the posts made me realize what the sugar free was. Hopefully this feeling will go away soon.


  12. There are no "Celiac genes", there are only genes that are associated with celiac disease.

    If "some" of the genes associated with Celiac are negative, what are the chances you are Celiac? I don't necessarily need a formal diagnosis of Celiac, but I need to know if this is the answer to my Anemia and Vit. D deficiency. Otherwise, I need to look at other areas. Can gluten sensitivity / intolerance cause deficiencies? My doc only ran the tTG IgA, IgA, quant, and Antigliadin ab, IgA. The Antigliadin being 13 which was high. (11-17- equivocal)All other were "normal". Early on when I posted someone said the Antigliadin was specific to Celiac, but of all the tests I have done, it is the only one high. If you are gluten intolerant rather than Celiac, could that affect this number?

    Thanks


  13. The symptoms you describe also sound like possible hyperthyroidism--have you had your thyroid tested recently? Our hormones are all interrelated and work as a system, and sometimes when a woman is going through menopause, she will also have thyroid problems.

    By the way, you can find all of your past threads by clicking on the arrow next to your handle/name in the upper-righthand corner and selecting "My Content."

    Thanks for the reply. On annual blood tests my thyroid level has been fine. I have one more test tomorrow and will see were that goes. If the two doctors can't agree, I'll just go gluten free and see what happens. I will pick up the gene test results tomorrow and see if they tested all parts listed under the FAQ.

    I found my past post under my content, but not in the forum section. Found out I was looking in the wrong forum. :)


  14. We have had some issues with my DD that landed us in rheumatology - involving fatigue, joint pain, weakness, hives, burning skin rashes, elevated sed rate . . . she has hypermobile joints and had lots of headaches, restless legs, leg and arm pain before we got our diets much cleaner of gluten. Long story, but in the end, some of the more effective things for her were identifying her h.pylori infection that was ravaging her gut and making b12 absorption problematic. Treating the h.pylori and getting her b12 supplementation seemed to be of great benefit to her. Her b12 blood test was fine, but the urine test showed that she was dumping large quantities (I haven't researched this myself extensively, we just found doctors that seemed to be better at improving our situation as opposed to observing our situation). We also got her some physical and occupational therapy to help her.

    We still get hives and burning rashes with environmental gluten exposure (acute we can navigate, chronic exposure leads to chronic problems), but the other issues (coordination, weakness, fatigue, joint pain - sed rate had lowered) were much improved / relieved. We use Zyrtec/ceterizine as our primary relief anti-histamine. While on Benadryl, our hiving continued. Benadryl is our backup to Zyrtec . . . and i don't know if it helps us or not. We try not to be in a position of needing it. It sucks when you end up broken out in hives in a medical crisis because it seemed that all of the "bad reactions to watch for" when they are doing interventions involve hives . . . like when you are fully broken out in hives, how will you know you are breaking out worse . . . actually she would break out worse, and it just really sucked! But it was really stressful to constantly monitor full body hives.

    Marilyn - would you mind sharing if it is all antihistamines, or which ones in particular, cause you hiving issues?

    Somehow I came across your strings of post and was curious because of your talks about anti-histamenes. I'm new to looking into Celiac for myself. It seems I aways have some kind of congestion, but would say I was allergic to anti-histamenes and not take anything because of how they made me feel. If I took Sudafed , I felt like I was in a fog, my head itched and I would not be able to sleep at night. I was taking Cetirizine for about a month around December and found I can't take it either. Didn't have the same feeling as with Sudafed but more gas, bloating and congestion. I have been off then on gluten for the past 2 weeks because of getting another test next week. I actually think my congestion cleared up the week without gluten and now I am more congested that I am eating it again. In my blood test I had an abnormal H.pylori IgM. Can you tell me what that means?

    Thanks


  15. I am new, January, to the Celiac board and to the possible diagnosis of Celiac. I posted somewhere before but am not sure where it went!

    I have read around in the board, but there is so much information that I am getting overwhelmed and don't know how to interpret all this information. Just when I think I understand, I find I don't know much.

    I went for a routine over 50 colonoscopy, and the doctor was concerned about anemia and the size of my red blood cells. This lead to several blood tests etc.

    tTg <3 (<5 Negative) , IgA 390 (normal - 81-463), Antigliadin ab, Iga, U/mL 13 high (<11 - Neg / 11-17 -Equivocal / >17 positive.)

    HGB 11.9 low (12.2-16.0), HCT 36.1 low (37.0-47.0) , MCV 68.3 low (81.0-99.0), MCH 22.5 low (27.0 -31.0)

    EO% high (0.0 - 3.0)

    ANA positive

    Total Protein 8.3 high (6.4-8.2)

    H.pylori IgM -equivocal - abnormal - all others negative - what does this mean?

    Iron profile normal

    Vitamin D, 25-hydroxy low (30.0-100.0)

    I also had a ct scan of small intestine and it was normal. On endoscopy the GI didn't see anything and on only one biopsy it came back normal. I have read around about peoples beliefs on this. Just received word of gene test, and it was normal and no celiac. I have not actually seen the results. I read on the FAQ you should go through Promethius, but my insurance would only cover going through Quest. Is Quest seen as reliable as other labs? Or do all my labs / symptoms point to Celiac no matter what?

    I am now taking iron and Vit D. and off gluten for about a week. I found some symptoms I may have are early menopause, heart palpatations, floating poo, and maybe restless legs. I don't really eat a lot of bread, pasta or processed foods. I looked at our spices and most of them don't contain gluten. No more soy sause, creamy dressings or boulion cubes though. Could the amount of gluten I eat daily affect the celiac panel tests? I've read on the gluten challenge you should eat 4 slices of bread a day. Is that so you have enough gluten in your system or what most people eat in a day?

    Any input would be appreciated.


  16. Hi Ziva,

    Sounds like you are having an interesting time with the diagnosis. That is more the norm than an exception when it comes to celiac disease. The attached link has lots of info and a thread link for safe foods. It is an announcement in the forum sections at the top but doesn't show up unless you are looking at the whole forum vs a thread.

    There is other medical testing you can do, and you can try a gluten challenge too. A gluten challenge may not be a good test for someone with no symptoms though. They call it silent celiac when there are no digestive symptoms.

    Enterolabs does stool testing for antibodies. Dr.Kenneth Fine argues that the antibodies to gluten are mainly in the intestine where they do their work, not circulating in the blood stream. So that is the best place to look for them. Enterolabs testing is somewhat questioned though.

    There is also a home test kit called Biocard from Canada. Biocard is not available in all areas though.

    Announcement: Frequently Asked Questions About Celiac Disease

    Thanks for the link. I will do more reading.


  17. The antigliadin IGA is specific to celiac. It, however, is not the most sensitive test and has a pretty high rate of false negatives. When it is positive it is positive though. The TTG is the one that can, as I understand it, in some rare occurences, be positive in other disorders.

    Still new at all this and trying to understand my tests! My tTG, IgA test result was < 3, can that be affected by the amount of gluten you are eating? Or does the amount matter at all? If you don't have Celiac, what would the number be? Also, if the endoscopy did not show any damage, is it worth doing any more tests to look further?

    Thanks for your help,


  18. I had the follow up appt. with gastroenterologist yesterday to review endoscopy results. He said there was no damage and did not agree with Celiac diagnosis from hematologist. I was disappointed to find out he took a biopsy from only one place. Also, he said the antigliadin antibody which was 11 on his test and 13 on the hematologists test is not positive which means I don


  19. I am also newly diagnosed, this Jan. and testing was started because of Anemia. As we were going through testing for me, my husband is remembering he had to eat bananas and cottage cheese as a young kid. We had him tested last week and are waiting on the results. Either way he is going gluten free with me. The next step is to have our 2 college age daughters tested. As I read the information on Celiac Disease, I would say they have more symptoms than me. It is pretty scary what all can go wrong with eating gluten. Good luck.