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Just Frustrated
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I think I just need a little bit of encouragement from those that understand where I'm coming from. Quick update, I haven't been officially diagnosed with celiac, but my Dr has agreed I have at the least an intolerance due to my reactions. My ttg Iga tests came back negative. I showed signs of marsh 1 on my endoscopy. Positive DNA test. And a definite reaction to gluten. Basically I've had cronic D, completely messed up female hormones, headaches, joint pain.

Anyway, I'm 1 month gluten free/ dairy free and generally I have good days and bad days. I'll have a week of no D and feeling good. And then days like today where I'm in the bathroom every 20 mins. I've been extremely careful, but I feel like every moment of my day all I think about is food. Sorry Just venting.

So my question is if this just an intolerance does it still take time? Maybe I'm just expecting to much to soon.

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I know how you feel (well, aside from the female problems). It is very frustrating, and you think "oh, I'll remove gluten and feel perfectly fine." Haha, not the case. There is still gluten in your body even after you stop eating it, and it will take time for it to all get out of your system. It's kinda like a Hemoglobin A1C test, which shows your average blood glucose level for 6 months. If you stop eating sugar, it will take 6 months for the test to show a "0". Similarly, it takes time for the gluten to get out of your system, and for your body to stop reacting to the gluten. I AM NOT SAYING IN 6 MONTHS YOU WILL FEEL PERFECT THOUGH! All I'm tryin to say is that I takes time. As for the recurring D, have you looked at what you eat before it starts up? Maybe you have a dairy allergy going on as well? I would recommend a "food and symptom journal" to keep track of what you eat, and when symptoms arise.

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I know how you feel (well, aside from the female problems). It is very frustrating, and you think "oh, I'll remove gluten and feel perfectly fine." Haha, not the case. There is still gluten in your body even after you stop eating it, and it will take time for it to all get out of your system. It's kinda like a Hemoglobin A1C test, which shows your average blood glucose level for 6 months. If you stop eating sugar, it will take 6 months for the test to show a "0". Similarly, it takes time for the gluten to get out of your system, and for your body to stop reacting to the gluten. I AM NOT SAYING IN 6 MONTHS YOU WILL FEEL PERFECT THOUGH! All I'm tryin to say is that I takes time. As for the recurring D, have you looked at what you eat before it starts up? Maybe you have a dairy allergy going on as well? I would recommend a "food and symptom journal" to keep track of what you eat, and when symptoms arise.

Actually...I don't think that gluten isn't floating around in your body for months. It's the antibodies your body made to gluten. It also looks like some, or all Celiacs, may continue making the antibodies for a few weeks after you stop eating gluten.

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Hi Elless...I get it. I find this whole disease to be extremely frustrating...I think every post I've started is something related to frustration. It's hard not to be...your doctor says don't eat gluten and you think that will fix it. Time goes by and you still don't feel good. That's hard.

It took me a month to not have D every day. I still have it sometimes after 6 months but it's not every day which I am thankful for. I do think that it takes time to feel better...longer for some than others. Try not to get discouraged...There are a lot of people on this board who feel really good...it may have taken some time, but it happened.

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I think the part I'm most confused about is the fact that my Dr says I don't have celiac, just an intolerance. I'm treating this as I do since all of the results I stated above. If it's just intolerance, would it still take time? Just curious of your ideas.

I probably will start a food journal. Dr's just haven't been any help. They are too quick to just push you through.

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Like my fellow "newbies" Icelandgirl and Georgia_guy ( we were all diagnosed around the same time, I am at 4 months) said, it can be really frustrating and sometimes extremely agitating to not feel better when you have cut out the one thing known to affect you, only to find out that may not be all.  Keep a journal, it's good advise.  That way you can track down if any other foods are bothering you.  Maybe cut back on dairy. A lot of us can't handle dairy due to damage in the small intestine, which you have some.  I wouldn't totally discount Celiac either.  I don't know your whole story, but did you have any other testing than the tTg?  There are other tests available and you might find one of the others are positive.  I would bet a dollar that if they had waited to do the testing you might have had a little more damage that would be enough to up your antibody levels.  Sorry, I got sidetracked.  Damn brain fog.  Some days are better than others and sometimes it does get worse before it gets better, but it will be worth it ONCE we start to feel better more days in a row.  Hope you get to feeling better!

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Are you eating a lot differently than before? Sometimes it can just be too much fiber, not enough fiber, too much fat, etc. It can take a while to regulate that sort of thing with any new diet. As an example - Some people suddenly go from lots of fast foods and convince foods to 6 helping of veggies a day - not what the system was used to processing.

It may be that you have another food issue. Start a food journal. Maybe you will notice that this week you had a lot of a certain food and had issues.

So, I would start with the food journal - looking for common foods eaten before the "trouble". I would also use the journal to assess fiber, fat, etc. - see if its pretty even or not.

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Thanks all. Beth, I've been completely dairy free as well as gluten free. I've made a few mistakes as well. My Dr only ran the ttg Iga and total iga. At this point I'm not willing to go back on gluten. I get so sick on just little bits. I'm pretty sure your right about it being celiac, just cause I have other auto immune, family history of auto immune. My Dr just won't diagnose me with a marsh 1 endoscopy and symptoms alone. Lol.

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I find that ridiculous!  It actually makes me mad.  Based on the improvement with the diet ( slow, but still an improvement) the fact the  you have some damage, and a positive gene test, what more does he want?  Maybe ask to have the full panel drawn now? You have only been off gluten for a month, and you did say you have had some cc's. Antibody levels don't drop off that fast unless they are borderline positive.  But like many have said, sometimes a diagnosis just really isn't worth it.  Just so you are getting good follow up care.

 

I am sorry I didn't notice in your original post that you were dairy free.  I am a dunce these days with brain fog.  It just won't go away.

 

I was having some problems with not feeling well for a while and finally figured out I had a problem with soy. It is a lot better but I know there is still something since I am getting low grade headaches and body aches every day.  Now just to figure it out.

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Kareng, I haven't really been eating that differently. I've always been a pretty health eater. Like I said, I have good days and bad days. Today was just a bad day. Lol. My neice was over this weekend. She's 13 and basically eats nothing but gluten. I may have gotten cc somehow. My house is mostly gluten free. And I did get glutened last week. That wasn't fun. It could be soy too. I was diagnosed hypothyroid 12 years ago.

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Those bad days can really take a lot out of you though...it's a hard place to be. I think the food diary thing is a great idea. It may help you to establish patterns of where you don't feel well. I started keeping one May. I've figured out that if I eat a lot of fat I get D...This may be due to the gallbladder I had removed in February. I also noticed that all of my bad GI symptoms get worse from ovulation through my period...which yes is a lot of the time...but it's a definite pattern so something to go on.

hang in there and come on here and vent as much as you want. There will likely be someone on here who's been there before.

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Dr's just haven't been any help. They are too quick to just push you through.

That hit the nail on the head!

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Kareng, I haven't really been eating that differently. I've always been a pretty health eater. Like I said, I have good days and bad days. Today was just a bad day. Lol. My neice was over this weekend. She's 13 and basically eats nothing but gluten. I may have gotten cc somehow. My house is mostly gluten free. And I did get glutened last week. That wasn't fun. It could be soy too. I was diagnosed hypothyroid 12 years ago.

What? I have a 13 year old who eats gluten, but outside of my house! Literally, it is eaten at school, at a friends or in the backyard and then she must wash her hands! Sounds crazy, but my husband and I need a safe zone away from gluten. No extended family or friends bring gluten into our house. Those are our rules. There are a few exceptions (like I boil noodles for her in her own dedicated pot), but I handle all clean up, etc.

Each time you get "glutened" it can set you back with major or minor symptoms as the autoimmune response gears up.

My husband has not been officially diagnosed. He went gluten free 13 years ago at the advice of my allergist and his GP. Not the best thing to do, but he knows that gluten makes him sick (and I know it) and a gluten challenge is not worth it. Not after feeling great for 12 years (first year was the hardest for him and just about everyone who has celiac disease or NCG I). Why am I telling you this? It is up to you to decide if you want to adhere to the gluten-free diet in spite of the fact that your doctor is not willing to support a diagnosis. I can say that my husband is so happy to be gluten free. He is even happier now that I am in the same boat and I got the official diagnosis.

Finally, keep a food journal. You may have other intolerances, but do not assume it is soy as I have Hashimoto's Thyroiditis and I live on soymilk since I have been allergic to cow's milk (milk protein not a lactose issue) (and my brothers) forever! Track your food and symptoms to determine a pattern.

Take care and you will feel better soon! Lots of time is critical for healing.

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I may have missed this but did you get a total IgA done to make sure your ttg IgA wasn't a false negative?

 

Edit: spelling is hard.

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Hi Elles, it is like you were reading my mind. I am sorry that you are also going through this and  let's hope you are gluten intolerant rather than having a celiac disease until doctors determine exactly what is going on. Unfortunately, I was recently diagnosed with celiac and it sucks so i completely understand your

frustration. After 3 years of being sick on and off, I was throwing up so much a few months ago that I ended up in the hospital. I was so dehydrated that they had to keep me there for a few days in order to figure out what caused this reaction. Maybe it was for the best because prior to that none of the doctors could figure it out. They used to say it is stress related or I ate something bad, etc. In these 3 years, I noticed allergy on my face, loss of hair, dry eyes, lack of energy and concentration. I am pretty sure that people began thinking I was just making these things up. I hate looking at my old photos because I can see how much I have changed in those 3 years. Even before I had results of my gastroscopy/biopsy back, I decided to go gluten-free. Based on what I heard from my doctors (although they told me not to worry until I get my resuts since they were not sure what it was) I began reading about celiac and followed a strict celiac diet.  I seem to be hungry a lot and I need to make sure I always have something cooked that I can eat. This is just an adjustment I need to get used to and not even once have I thought of taking something that is not labeled gluten free. I love food, I have always loved it but my fear of being stuck in the hospital again keeps me away from anything that could even possibly have gluten.

These last few days I have had headaches and lack of energy. I am unable to concentrate and I am irritable especially when it seems to me that my family does not really understand what I am going through. I truly do not think they understand how it affects me and it makes me feel that they also think that I use this damn disease as an excuse for my behavior. While I know that they are worried about me, I would hope that they would be more willing to learn about it instead of making comments that just upset me. Also something that seems so obvious to me, it does not to them.

I have a few questions that i hope you can answer for me:

Do you take any vitamins/mineral supplements and if so, which ones?

Can you recommend make-up, facial creams that are gluten free?

Can we get sick from using cleaning products, bleach, etc? How can i make sure that my laundry detergent is gluten free?

If you lost any hair, did it grow back and if so, how long did it take?

Has it been hard for you to go out with your friends?

Since i am still new to this, any advice would be helpful. I do not want people to feel sorry for me but i just need someone who understands what i am going through.

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I was going to ask the same thing, what was your total IgA number-and your other lab numbers?

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Ttg Iga was 1 out of a range of 1-4 being negative. Then they ran immunoglobulin A which I'm guessing was a total iga maybe? That was 339 out of a range of 81-463. I was also on a gluten light diet, starting a few weeks before the test.

We do have rules in my house. My so is great with washing, and only keeps gluten in a separate cabinet below everything else. Separate bowls and everything. We only make gluten free meals. It is actually my so's neice. She literally will only eat pizza, chicken nuggets, and pancakes. Oh and junk food. She hasn't had much of a stable life, and she literally won't eat anything else.

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Thanks all for the thoughts and advice. I'm going back to see my gyno tommorrow, and I'm gonna ask if they could run the rest of the tests as they have their own lab. One of my symptoms were hormonal. My periods got very light, and would come every few weeks sporadically. With it I got pain in my left overy that wrapped around my back and down my legs. Like a knife stabing me. They found 3 small fibroids, but could figure out the cause. Now I'm thinking it could all be related.

Like I said, generally I've seen improvement. It's just those bad days that get me.

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I am extremely frustrated in trying to figure me out!!! I KNOW for sure that I cannot tolerate dairy or the toilet is where I find myself instantly!! I cannot tell if I am sensitive to gluten or if it is salicylates....then I wonder if I have candida.  I have a host of symptoms and my dermatologist just diagnosed me with uticara hives.  I have not had allergy tests or any other tests.  We agreed that it didn't matter whether I have celiac or just gluten intolerance....that the treatment is the same....no gluten.  But I am really having trouble differentiating as to whether it is actually gluten intolerance, candida or salicylate sensitivity.  Anyone have any pointers on how you can tell the difference??  I get left side pain whenever I eat foods in any of those groups and L acidolphus helps to clear up the side pain????

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I am extremely frustrated in trying to figure me out!!! I KNOW for sure that I cannot tolerate dairy or the toilet is where I find myself instantly!! I cannot tell if I am sensitive to gluten or if it is salicylates....then I wonder if I have candida.  I have a host of symptoms and my dermatologist just diagnosed me with uticara hives.  I have not had allergy tests or any other tests.  We agreed that it didn't matter whether I have celiac or just gluten intolerance....that the treatment is the same....no gluten.  But I am really having trouble differentiating as to whether it is actually gluten intolerance, candida or salicylate sensitivity.  Anyone have any pointers on how you can tell the difference??  I get left side pain whenever I eat foods in any of those groups and L acidolphus helps to clear up the side pain????

Maybe easy to rule out at least celiac disease with a complete celiac blood panel. Have you had that done?

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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