talula2

Thank you for your post it is greatly appreciated.

I was still on gluten full force when I had all the other blood work done back in april and results were negative but I decided to give it up as a last resort. I followed a SCD and it helped so much so yes my answer is I have gluten issues and feel better without it. My Dr did this last blood work just to rule it out for sure and I decided not to have the endo at all. Now that the results have come back positive for the IgA now I am concerned that I should have it done. Does this say yes it is celiac or is this test just that there is some inflammation going on in there somewhere? I am not really sure what this test is as I don't see this one mentioned too often here on the boards....Confused.

I have just recieved yet another panel of blood work back from GI dr and am not sure on the meaning. Let me first say I have as of now had all available blood work for celiac possible and everything is negative. My GI did one last panel he said specfic for celiac as one last resort before the endo.

Tested for

S. Cerevisiae Ab, IgA . S result was 58.0

0.0-20.0 negative

20.1-24.9 Equivocal

25.0-34.9 weakly postitve

with >=35.0 positive

So you can see this was positive

with S. Cerevisiae Ab,IgG, S result was 16.1

with the same range of results as above. So this was negative.

Can anyone help me understand this result , I would say this is a positive result but for what I am not sure, my Dr said no rush to see him and I can't get an appointment until December. I have been gluten free since June and feel 100% better and look better also gained a bit of weight so I am thriving. Would this test result say I do have celiac or something else. Can someone please offer a bit of advice as I finally got a positive result and don't know what to make of it....Thanks in advance.

L

Hi I am following the SCD and doing very well but seems with my increased protein consumption I have become constipated. I am hoping this will agjust in a few days but was wondering what I can take to ease the problem. I do drinks tons of water too. I have a supplement call fibersmart that is gluten free but the SCD says no FOS and that has it. I also just love this product called teeccino a coffee substuite it says it is gluten free when brewed but it does contain barley. I have never had problems with this one before but now I am 100% gluten free I don't want to take my chances. Any one use teeccino? Or suggest anythigng else?

I never realized just how damaging it was eating things I shoudn't. Amazing what can happen to your body. I am still feeling better than I have in years and that is more than enough to stick with it. I thought I would feel realy limited but I am actuall never hungry, with all the extra protein it keeps me full longer and the awful cravings are gone. I know I will have bad days but I think they will be easier to handle now seeing my progress. Good luck to you as well. Gluten free, dairy free and soy free and loving it.

I just wanted to share with all of you my amazing progress so far and it has only been 12 days. Little background first. Had allergy testing done 2 years ago and discovered, wheat allergy, dairy allergy, and soy as well. I was told my wheat allergy was not much of a big deal just don't ingest too much in one sitting ( big bowl of wheat cereal as he said). I didn't really see it as such a big deal so did what he said and just really limited my wheat. I noticed constant bloating, swelling throughout my entire body as well as water retention and horrible mood changes almost like anger and depression. It took me days to recover form this. It seems to happen with all grains After celiac testing was done just a few weeks ago ( still no one can figure if my tests results show anything at all) I decided to go gluten free anyway. I noticed a change almost right away in my joint pain and mood as well as energy level, but I continued to have bloating severly when I ate carbs. I read the post about the SCD diet and gave it a try.....WOW what a difference this has made for me in just 12 days. I have energy to burn, I am in a great mood almost always, I am not snapping at my kids, the bloating getting better day by day. I feel like I have a better quality of life just after two weeks. My dr said not to read into too much that it is just because I have changed my diet and am eating healthier, I think he is dead wrong I have always been a healthy eater that is why I included more grains to begin with, I make all my own food and don't eat anything un natural. I have never been over weight and exercise 6 days a week, but continued to be very unhealthy. I believe that it is 100% related to my diet, I am convinced more than enough to never eat gluten again...ever. I haven't felt this good in 10 years. I certainally don't need a positive test result to tell me I have gluten issues. Taking out the carbs to stop the fermentation and let the gut heal convinces me even more that I had some problems going on. I can only imagine what I will feel like in 6 months from now. Oh another thing after my last baby I had this horrible mask of pregnancy, in the past two weeks it is nearly gone, my guess is it has been quite some time since I have been absorbing vitamins properly, my skin is radiant. Just thought I would share my experience.

This has been so overwhelming because every dr. has a differernt opinion, but I have to agree that being off the gluten for only a couple of weeks and I don't feel the brain fog and no where near as tired and generally that lost of control and irritated feeling is almost gone. It also feel like I am building a bit of muscle back strange I know and i am not lifing any weights. I guess I am absorbing vital nutrients that I was not before. I don't expect miracles with my stomach as that is where the damage is for me, I know that will take time to heal. I have given up all carbs , I was having the worse time absorbing then constant bloat. So I will see how that goes after a couple of months.

After seeing another DR. today because mine was away he informed me that he would consider my TTG test wich was 6 on a range on 0 to 10 more than likely positive especially seeing as I was gluten free when they did the test! Strange because my other DR said test was negative. Who do I believe, I can't get into my GI dr until Sept. I know I am staying gluten free so does it really matter if it is positive or not.

I got the rest of my results back today

IgE 17.2 range of <100

Immunogonulin M 121 range of 53-375

Endomysial Ab negative

TTG 6 range of 0 to 10

My thyroid was on the lowe side of normal 0.87 range of 0.30 to 5.0

Vit B12 was high 709 range of 113 to 530

He said that I have slight elevation of White blood count in my stool due to intestinal inflamation.

So according to the results I am in the clear for celiac is this right?????

I can't believe that I found this post, every question I was thinking or wanted to ask was answered..AMAZING. I have been to hell and back in this crusade to figue out my problem, Tested negative for celiac but I do indeed have a wheat allergy via skin testing with allergist as well as soy and dairy and lactose intolerance. Whic I understand is pretty normal in gluten intolerant people. In the past year minimal amounts of wheat or gluten what ever it may be saets me right off for weeks I get the classic symroms as brain fog, sore achey joints and what not as well as the horrible intestinal damage. I have been getting worse with what Ican eat though seems I am developing intolerance daily. Now nuts are hard to digest as well as bananas, apples celery and lettuce and I just can't tolerate carbs at all any grain ones as well as startcy veggies either. Now reading this post I understand what is happening in my body, bacterial overgrowth as well as maybe candidia. I am going to start th SCD I know this will make a huge difference. Thanks

I do agree with the probiotics., I have been taking them now for about a year as well as digestive enzymes. I reat really well most of the time and I have become so afraid of carbs that even when out I don't eat them it is always a salad or steak. I honestly feel like I can't eat anythig. When I do have carbs say like oats or even a startchy veg I start to crave more cards like there is no tomorrowand of course I eat more but never empty carbs as I phsyciall just can't the outcome is horrible. Even still with in a few hours I am water retentive and put on 3 or 4 pounds right away in water. It only takes a few days for my body to release it though but it is quite mind boggeling. My dr said I have malabsorption for the wheat allergy and that in time it will possibly get better. I honestly feeli like I am going insane the most of the time as there is not too much I have left to eat.....

My dr. went over my lab results and we were a bit suprised we were expecting my vit B 12 to come back low when in fact it came back higher 790 at a range of 305-535. As well my throyid test was on the lower end of normal mine was 0.78 range of 0.90 to 5.50. My dr. sid no big deal as it was still in the normal range and th B12 was not that elevated. Does this ring a bell to anyone and is he right, these results are not a worry????? I am a bit concerned.

I am convinced I am gluten intolerant if not celiac but my test results say other wise.

Another thing is that my TTG test cam back at 6 with a range of 0 to 10. He siad mostly the results he sees are 3 so I was a little higher than what he normally sees but it is still in the normal range Is this right? All my other test were negative for celiac.

For some reason my body doesn't digest carbs that well, even sweet potato and squash give me problems with bloating and followed by water retention. I am guessing this is due to the intestinal damage caused by my wheat allergy? I did a south beach diet some years back and it was at that point that I discovered that something might be up with my body and wheat as ell as dairy. I do have to say I did very well on that diet and need to go back to it for sure it really worked well and I had occasional bloating but not too bad. I often blamed my problems on doing that diet to begin with but now I know differernt that if the problem was there and I took it away the chances of ever getting it back into my diet were slim so now this is the case. I don't do a heavy protein but I stick to the more veggies and a bit of fruit and mostly chick peas and beans and a bit of animal protein as well as nuts. I seem to so well. I think this is how I should eat!

That is so amazing that you say that about the fruit and veggie because a week ago I was feeling so bad that I was afraid of food and went on an elimination diet myself with fresh homemade juices and slightly steamed veggies and purred soups. After a few days I have to say I started to feel so much better, my aches and apins lifted my water retention left and my bloated tummy was deflating. I was full of energy . So now I am on a journey to find my culprits as of course gluten , dairy and soy are ou as I have tested positive for those FA's but now and I also will leave out all the major ones such as peanut, egg, night shades as well until the end. I know this will take sometime to do but I am giving my self the summer months to work it out. So far I have been safe with spinach and berries, carrot and apples so I will continue everyday or two to add something new until I am able to have a good variety of food. To be honest with you living off of all these fruit and veg has made me feeli alive again like mmy system is having a well deserved rest. I feel better than I have in years wether that is the no gluten in my body or the rest of my system I will certainall take it.

Yes I certainally think you are right I am in need of a new allergist and I do have an appointment with a new one in Sept. After the Rast testing an the skin prick test I was even more confused....all the rast testing came back negative to any allergy what so ever but the skin testing he said was more than obvious so for a long while I was in denial that I even had FA"s to begin with. Yes he said with only being allergic to the whey in dairy that the process of cooking it makes it easier on the body so hence the recommendation of eating it cooked came out but I have never seen that or heard of anyone eating dairy once it is cooked??? I sure can't. Same with the wheat he said don't eat in excess and said I would have to find my tolerance level. Now I think tolerance level if I have to find a level tha works befor I become poisioned what the hell is the point of even eating it at all knowing it will eventually cause me problems. I just hope now that I get my eating on trackbecause I keep developing other food problems monthly it seems since I have been watching my gluten. Dark chocolate was my saving grace and no bananas either, chicken and tuna as well seem to bother me. Is this normal to develope more FA's after all this. What am I going to be able to eat???

I just wanted to thank everyone on these boards because I no longer feel alone in this never ending battle. Here is my story....^ years ago I went on a south beach type diet to lose a few pounds after having my first baby, I was never heavy in fact always skinny but after baby needed a bit of help. Felt great while eating this way, but started to experience a bit of bloating and water retention, took no notice. After a couple of years I ditched on this diet and just ate what I wanted that being gluten, gluten and more gluten. I felt awful most of the time but didn't put it all together. I kept getting worse and every dr. I went too said IBS or depression (sound familliar). I kept getting thinner now I was underweight. I became pregnant with my second an that is when all hell broke loose. I craved every ounce of sweet food you could imagine and would eat it and eat it like crazy I didn't want anything but carb foods and dairy!!!! I had the hardest time gaining weight in fact I was losing as well while pregnant and feeling like hell most of the time, so emotional. well needless to say the pregnancy didn't go well and we almost lost our baby due to low amniotic fluid, I was on bed rest from 28 weeks on until we had her at 36 weeks she was born healthy. Me on the other hand after my c-section was in horrible shape. I couldn't eat anything at all after that, I couldn't digest carbs, dairy was out, wheat made me feel so bad I felt like I was someone else. For two years up until now I have walked around in a fog, irritated all the time, so bloated it is just not normal, my water retention in unbareable I can gain up to 7 pounds in water over night, which I think is giving me an eating disorder because I am afraid to eat anything and when I eat the wrong things it is all the sudden a huge rise on the scale. My pms is out of control I feel so far from myself. My poor husband doesn't fully understand because he doesn't experience it at all. I did go again to anothger dr who once again said IBS and post partum depression, I had to beg to see an allergist but was able to get an appointment. There they found a slight wheat allergy only 1 on a scale of 4. Dairy and soy as well with possible egg white and sugar was a no no. So his advice was not to eat wheat in exess a bowl of cereal or a sandwich a day is more than enough. I did notice that everytime I ate something with wheat in it that I would balloon up in my tummy, within a couple of hours, massive water retention, complete mood change, tired but the worst thing was the following days after.....I would wake up next morning weak and tired, angry, water logged, I started to develope recently breating problems after I have wheat or gluten of any sort kind of a shortness of breath. My heart would race, I would get a pain under my left rid cage that last about a week and my muscles feel so sore even to touch gently. My dr thinks I am nuts because all of my testing came back negative. They did all 5 test for celiac and all negative it doesn't even show up that I have any gluten issues so they say I need to just let it go and get on with my life. I have every symptom ypu could think of, I also have scoliois since a child, and bouts of hypoglycemia STRANGE. I decided in Jan to go gluten free and I felt fantastic still certain food bloated me up, but overall I felt much better. I went on vacation and ate all the things I shouldn't have and am still recovering. In fact this is as bad as I have ever felt. Went back to the dr. they said must be intestinal irritation maybe I have a bacterial ovegrowth.... but doesn't gluten problems cause that anyway. I am back on the gluten free diet now in fact I am just eating fruit and veg until my tummy settles as I still get bloated, not nearly as bad though. So once that is over I am going back to gluten free for ever. I don't need a dr to confirm how I feel or a test to say it either but it would be nice if there was a bit of understanding on the part of the dr's. I am going for more allergy testing and another appointment with a GI in September but until the it is gluten free for ME. Sorry long boring post but really I was just getting it off my chest. I have to admit that I feel so much better at the moment I am only eating fruit and veg right now but I don't have any joint pain , water retention, or even general feeling of flu I have so much more energy. I feel like I could live like this forever. Almost a different person. I even notice a bit of muscle tone in my arms is this possible in just a month. I will slowly start adding back in a food at a time to eliminate what I can't eat. Although I am a bit afraid after I am feeling so well to eat anything els but I will need more food that fruits and veg. I can't tolerate carbs at the moment my guess is that is from some intestinal damage and am hoping that I will be able to eat a bit of corn once and a while after healing. Sorry again for going on and on. I am just so happy to have found this sight for support. Even though I don't have celiac, negative testing I am convinced that I certainally have a huge gulten problem and am going to contine living as if I do. Thanks for listening to me rant and rave about this.

Thank you again for your response. I have started to take supplements Vit c as well as calcium and vit D, only thing is in my blood work my vitB12 levels came back high??? Dr said very unusual and left it at that said I didn't need any additional vit B12. Has anyone experienced higer leves of Vit B 12? With gluten issues? I also had wbc in my stool analysis only slightly but he siad just some inflamation for the allergic response to wheat??? Anone experience this as well?

Thank you againn the the support and advice.

I really don't need a dr or tests to confirm that I indeed do have a problem with gluten as my body makes me fully aware, i just gets me so discouraged that I am just brushed off and tet after test they just say oh it is IBS . I know the awful feeling when I ingest something with wheat or gluten what ever my problem is I am going to avoid it at all costs. I will try and get a hold of my labs and post the results.

Thank you all so much for the respone and advice, greatly appreciated. I have had the testing done by an allergist and I tested positive for the cliassics. Dairy he said was very highly allergic as well as soy, but wheat was the one that showed only a slight response but it was there, that is the reason for the mild allergy diganoses. He told me to avois overt dairy, if I eat it it has to be cooked ( I seriously can't eat any of it). No soy and wheat can be eaten but not in excess. So after that I just kept going along eating how he said then after the birth of my baby ( hard pregnancy and c-section) I have never been the same. I can't touch any of it at all. When I went through everything to be told I had post partum depression and possible IBS.....Continue to eat the same and I would be fine. After another year of feeling tired, depressed, swollen and bloated I went to another dr. stopped eating wheat and switched over to oats and rye. Felt much better for a while then everything came back again but worse, it seemed like I couldn't eat anything at all after eating gluten. I am now keeping a food diary and I did a detox cleansing diet for two weeks because seriously I just couldn't eat solid food without it causing me great discomfort. I had become so emotional that mu husband didn't know what to do. Then when I went to the new dr, he said he was almost convinced that I had celiac and had instestinal damage and that is why I was having a hard time digesting foods. I was relieved because I felt as though that was what I had as well. I came off all gluten, even all carbs because I just couldn't digest them and had veg, protein, nuts and fruit and have to say I felt much better it took a few weeks and the first two weeks were hell but now I feel so much better. Well now after the test came back negative and all other tests were fine his conclusion was not to take away the oats and rye continue to eat them that gluten was not mu issue. My test in the allergist office was gliadin that I was positive to in the form of wheat, but I did not test positive for oats. Is gliadin not a form of gluten or am I wrong? Now I am left hanging again, I believe that I have celiac disease or some for of gluten issues because I get the same feeling when I ingest either or and sugar throws me completely off as well. I also get these horrible craving afters I have eating anyhing gluten that I just can't stop eating it. I will continue along going gluten free and see where that takes me. I know for sure that something is hitting me hard because here I am 8 days into my cleanseing diet of fresh fruit and veggies and I feel better than I have in years, now I have to start adding back the foods to see the where lies my problems...Wish me luck. I see both specialist ( GI and allergist ) in Sept. Thank you for all you rsupport here and advice.

I was diagnosed with a mild wheat allergy a year ago, that has become terrible now and I can't eat any without the body swelling , fluid retention 7 months pregnant look with the mood to match and it lasts for days, after I have eaten something containing gluten it takes me a week to recover. It is getting worse now. I also have some type of depression that follows for a few days, I feel low afterwards. A few months back I ate wheat to see where I was and I am still recovering from it now. I have been bloated for 8 weeks and moody as well as swollen knees and sore joints after going to my dr. he suspected celiac seeing as I already had problems tolerating wheat. I was diagnosed with malabsorption syndrome as I couldn't eat carbs or meat, chicken or fish I had a hard time digesting any of that. He ran numerous blood tests and checked for everything but all the blood work came back just fantastic healthy as a teenager. The celiac test ttg and iga went of to the Mayo clinic. After results were back dr said I was negative on a range of 0 to 10 I was a 6. He told me not to kill myself with my diet anymore and eat what I want and get on with my life. I have been searching for answers for 5 years now. So these symptoms sound all to familliar with most of you here on these boards. I am thinking I will just continue along gluten free for now as I am feeling slight improvements slowly. I am afraid to eat anything at all really as I had such an awful past 4 weeks with my digestion. I am keeping a clean diet of mostly fruits and veg as it seems that is all my body can handle right now. I know my allergy to wheat is slight but does that mean I am allergic to all gluten...rye, barley and what not?

I saw an allergist last year that is when I was diagnosed with a mild wheat allergy it was only a 1 on a scale of 4 but that seems to hit me harder than any other allergy I have had yet. I swell up like a puffed up balloon for days, and I have a huge distended belly but it seems to affect me emotionally as well I have terrible mood swings and achey joints knees mostly. I have a fogged over feeling that lasts for days that is why I thought I had celiac disease. I don't know though my dr. said he had never read the results of the test before as this was the first one he has done (he is my GP) I can't get into the GI until Sept. After reading the boards it seems as though I would have a positive reading or as they said weak positive. Not sure????? Confused really, my test range was 0 to 10 mine being a 6 so from other post 6 seems to be a weak positive, but my dr. was so pleased to report that I was not celiac and could just chalk it up to allergies and find my tolerance. Oh boy another person to brush me off. I have tried to eat any for of gluten and I am in bad shape for weeks. I am seeing the allergist again to do update testing but as well that is not until Sept. I am going to stay gluten free now as it nearly kills me to eat it, it seems it takes a few day to build up and then bam I am a mess.

Over the past few years I have experienced digestive issues, extreme bloating in paticular after many foods. I have seen and allergist and was told I was extremely allergic to dairy, soy and avacado. Slightly allergic to wheat and possible egg whites. After ellimnation of most of these foods I was told I could eat small amounts of wheat, I stll suffer digestive distress. I went total wheat free and still no difference but continued to eat my oats and rye crackers. The tTg test was done and sent to the mayp clinic, my result was 0.06 wich my dr said was normal. He said the range was from 0.00 to 0.10. After reading on various posts it seems everyones range is different. I have seen that anything above 5 is considered positive. Can anyone help me understand this result???? I was also tested for liver, thyroid, and vit B12 and all came back fine as well as iron was all normal.