Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

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




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


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

New Here With So Many Questions! Skin, Other Allergies...?


Cortney

Recommended Posts

Cortney Newbie

Hey everyone!

I am new to the board and I was just recently diagnosed with a gluten intolerance. My celiac panel came back negative, but I highly suspect I may have it. We did additional blood work to see if I had a delayed allergy to gluten or intolerance. And it came back high. I don't know if I possibly came back negative on the celiac panel because in the week before I had not consumed very much gluten. But I am already on my gluten free diet now. Its been about a week. Along with many stomach issues, my gallbladder acts up and I have had a few attacks which hurt so bad. I also have keratosis pilaris on my arms and legs and stomach. Its pretty severe. I also have OCD. I have had OCD severely my entire life. I also have joint pain in my knees which I assumed was from years of gymnastics, now I am not so sure. I was tested for a milk allergy as well, but it was a blood test for immediate allergy. Which came back negative. We did not do a delayed milk allergy test because there was not one in the labs.

How do you test for a delayed milk allergy or a casein allergy? What is the test that I should ask my doctor for. I also would like to be tested for delayed allergies to soy, eggs, and nuts.

I am so afraid I will have another allergy besides gluten. I hear if you are allergic to gluten you often are allergic to casein. Why is this?

Also, I have read wonderful stories about peoples Keratosis Pilaris (NOT dermatitis herpetiformus) going away after a gluten free diet. Have any of you experienced this?

Could my anxiety and OCD possibly get better on this diet? Anyone feel better afterwards? That would be life changing!

Is it okay to consume products produced in a facility that also produces wheat if the ingredients are clean?

Is it even possible that my celiac panel was a false negative and that I could in fact have celiac. My stomach problems are terrible, my vitamins are low, and my skin, and anxiety to top it all off just add up to me. What do you all think?

I am a vegetarian already, so cutting out gluten has been a challenge. I am afraid that I will also have a casein allergy and have to be a gluten free vegan. At my age, 20, And as a college student living at home, I really can not just take over the house with my groceries. And I really dont want to have to limit my diet any more.

Soo many questions. Can anyone help me out?

I am new to this everyone. Thanks so much!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome to the board.It is best to eliminate both dairy and soy at first until you are well healed. Once you have been feeling better add them back in one at a time and see how you tolerate them.

We do have some here that are vegetarians so you may want to do another topic asking for specific advice from them.

If you can go with a whole food unprocessed diet for a while that is the best way to go. Get fresh veggies and fruits, beans, nuts, rice etc for now. There have been some veggie folks that have found they did need to add meat back in as it is tough to get enough protein especially if it turns out that soy is a no for you.

I think you will find that you will be feeling much better before too long but it does take some getting used to and some of us do go through a bit of withdrawl. Hang in there and ask any questions you need to. Hopefully you will feel much better physically and mentally soon.

Cortney Newbie

Welcome to the board.It is best to eliminate both dairy and soy at first until you are well healed. Once you have been feeling better add them back in one at a time and see how you tolerate them.

We do have some here that are vegetarians so you may want to do another topic asking for specific advice from them.

If you can go with a whole food unprocessed diet for a while that is the best way to go. Get fresh veggies and fruits, beans, nuts, rice etc for now. There have been some veggie folks that have found they did need to add meat back in as it is tough to get enough protein especially if it turns out that soy is a no for you.

I think you will find that you will be feeling much better before too long but it does take some getting used to and some of us do go through a bit of withdrawl. Hang in there and ask any questions you need to. Hopefully you will feel much better physically and mentally soon.

Thank you for your reply! So I should eliminate those foods as well and then when do I know when to reintroduce them. What on earth will I eat? Could I limit my intake of dairy but not fully eliminate it, and then gradually eat more once my digestion improves?

AVR1962 Collaborator

Are you having any burning pain in your stomach? What happens is the gluten wrecks the villa in the intestines and they no longer absorb nutrients to the body like they should. But in the process of the wreck other digestive mechanisms also stop working properly so it is very common for new patients with celiac/gluten intolerance not be able to eat dairy. It could be the caisens (Protein) or it could be the sugar in the dairy products causing the problem, depends on the person. Many gastro docs will have a prson go off both initially until the body can repair itself.

Being vegetarian you probably already know the importance of protein in your diet. Now though is a time that the healing agents in protein are important. If your stomach is in bad shape proteins (meats) become hard to digest but very important to get it in the diet in same form to continue to promote the healing factors.

Raw diet and a food journal. You may find that other foods are giving you issues. They may not always but while the system is in the healing process we become sensative to foods that we were able to eat before. Common intolerances are soy, high fructose, gums such as xanthan and carrageenan, corn for some, eggs for others. We are all uniquely different. But a jouranl will help you pinpoint these problem foods.

Request your lab work and get your vits figured out. For me that was a big big help.

Cortney Newbie

Are you having any burning pain in your stomach? What happens is the gluten wrecks the villa in the intestines and they no longer absorb nutrients to the body like they should. But in the process of the wreck other digestive mechanisms also stop working properly so it is very common for new patients with celiac/gluten intolerance not be able to eat dairy. It could be the caisens (Protein) or it could be the sugar in the dairy products causing the problem, depends on the person. Many gastro docs will have a prson go off both initially until the body can repair itself.

Being vegetarian you probably already know the importance of protein in your diet. Now though is a time that the healing agents in protein are important. If your stomach is in bad shape proteins (meats) become hard to digest but very important to get it in the diet in same form to continue to promote the healing factors.

Raw diet and a food journal. You may find that other foods are giving you issues. They may not always but while the system is in the healing process we become sensative to foods that we were able to eat before. Common intolerances are soy, high fructose, gums such as xanthan and carrageenan, corn for some, eggs for others. We are all uniquely different. But a jouranl will help you pinpoint these problem foods.

Request your lab work and get your vits figured out. For me that was a big big help.

Hey! So I do notice that when I eat eggs I get very sick to my stomach. And I have been gluten free for a week now but my digestive issues persist. I dont want to give Too much information, but I am still having diarrhea and I notices that it was worse this morning after I had my protein shake. It is made from whey, so obviously dairy. I have been a vegetarian for years, and when one is vegetarian for a long time, they can not just introduce meat back into their diet or they get very ill. Thats not something I need right now lol. Besides, I won't eat meat. There are proteins in vegetables, are those proteins not able to heal me? I read something about amino acids helping, I could always take that in tablet form. What do you think? And how long should I be on this raw diet before I try to introduce dairy back into the picture? And gluten is always a no no for life correct? Since I have an allergy to it according to my blood work? Once my body heals, I still shouldnt ingest gluten right?

ravenwoodglass Mentor

Hey! So I do notice that when I eat eggs I get very sick to my stomach. And I have been gluten free for a week now but my digestive issues persist. I dont want to give Too much information, but I am still having diarrhea and I notices that it was worse this morning after I had my protein shake. It is made from whey, so obviously dairy. I have been a vegetarian for years, and when one is vegetarian for a long time, they can not just introduce meat back into their diet or they get very ill. Thats not something I need right now lol. Besides, I won't eat meat. There are proteins in vegetables, are those proteins not able to heal me? I read something about amino acids helping, I could always take that in tablet form. What do you think? And how long should I be on this raw diet before I try to introduce dairy back into the picture? And gluten is always a no no for life correct? Since I have an allergy to it according to my blood work? Once my body heals, I still shouldnt ingest gluten right?

If your not tolerating the whey protein perhaps you could try hemp protein instead? Instead of mixing it with milk Almond milk would be another alternative or mix it with rice milk, just not Rice Dream as that isn't safe for us as it is processed with barley.

Try to make sure you are getting a complete protein, like rice and beans for example.

You can give the raw foods a try but some of us need to have our veggies well cooked at first to digest them the best.

Cortney Newbie

If your not tolerating the whey protein perhaps you could try hemp protein instead? Instead of mixing it with milk Almond milk would be another alternative or mix it with rice milk, just not Rice Dream as that isn't safe for us as it is processed with barley.

Try to make sure you are getting a complete protein, like rice and beans for example.

You can give the raw foods a try but some of us need to have our veggies well cooked at first to digest them the best.

Do you think it is safe to try the gluten free diet alone and still eat dairy? I just ordered some vegan hemp protein powder. And I use almond milk as it it. But I just read it can take months to see any improvement in the way you feel with a gluten intolerance after you eliminate it. So do you think it would be safe for me to continue dairy just in limited amounts. I have no idea how to get tested for delayed dairy/casein allergy, and apparently neither do my doctors. They keep ordering an immediate milk allergy test. That isnt the same right?


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Hey! So I do notice that when I eat eggs I get very sick to my stomach. And I have been gluten free for a week now but my digestive issues persist. I dont want to give Too much information, but I am still having diarrhea and I notices that it was worse this morning after I had my protein shake. It is made from whey, so obviously dairy. I have been a vegetarian for years, and when one is vegetarian for a long time, they can not just introduce meat back into their diet or they get very ill. Thats not something I need right now lol. Besides, I won't eat meat. There are proteins in vegetables, are those proteins not able to heal me? I read something about amino acids helping, I could always take that in tablet form. What do you think? And how long should I be on this raw diet before I try to introduce dairy back into the picture? And gluten is always a no no for life correct? Since I have an allergy to it according to my blood work? Once my body heals, I still shouldnt ingest gluten right?

Whey is a cheese protein and it is possible your system cannot tolerate it right now. Give it at least 2 months without dairy to allow healing. Depends on the person but it could take longer. When you introdue again, go small. If you try alternative milk sources also be very careful.....sometimes when our system is healing it is hard to tolerate the carageenan and/or xanthan gum that are in some of the almond and coconut milk. That's where a food journal helps. I could not eat either for about 8 months. Only milk I could drink was rice.

Here is a link, skip the ads, I am not promoting. The info might be a bit promotional but the basics tell the importance that protein plays. Since you have been a vegetarian for awhile I am assuming you have a good knowledge of some of this already, and yes, amino acids can help. Open Original Shared Link

Stay away from all gluten.....that means barley and rye as well as oats that are not gluten-free. One thing you might notice is that you may not be able to eat oats without them going right thru you. Again, the body cannot digest the oats properly when your system is wrecked. I have heard it taking 2 years to get to the point of being able to eat oats again but I think that is different from one person to the next.

I was on a raw diet well over 5 months. My stomach was so acidic but this might not be your situation. I think you will know as you will start feeling better. One more tip, stay away from the gluten-free baked goods for now. They have additives the body sometimes has a ahard time with in the beginning. I know that sounds like alot but your goal here is to get better and that system needs repair. I kind of had to think of my stomach being that of a baby's stomach. We are real careful what we feed babies and that is how we have to be with ourselves, at least to start.

Cortney Newbie

Whey is a cheese protein and it is possible your system cannot tolerate it right now. Give it at least 2 months without dairy to allow healing. Depends on the person but it could take longer. When you introdue again, go small. If you try alternative milk sources also be very careful.....sometimes when our system is healing it is hard to tolerate the carageenan and/or xanthan gum that are in some of the almond and coconut milk. That's where a food journal helps. I could not eat either for about 8 months. Only milk I could drink was rice.

Here is a link, skip the ads, I am not promoting. The info might be a bit promotional but the basics tell the importance that protein plays. Since you have been a vegetarian for awhile I am assuming you have a good knowledge of some of this already, and yes, amino acids can help. Open Original Shared Link

Stay away from all gluten.....that means barley and rye as well as oats that are not gluten-free. One thing you might notice is that you may not be able to eat oats without them going right thru you. Again, the body cannot digest the oats properly when your system is wrecked. I have heard it taking 2 years to get to the point of being able to eat oats again but I think that is different from one person to the next.

I was on a raw diet well over 5 months. My stomach was so acidic but this might not be your situation. I think you will know as you will start feeling better. One more tip, stay away from the gluten-free baked goods for now. They have additives the body sometimes has a ahard time with in the beginning. I know that sounds like alot but your goal here is to get better and that system needs repair. I kind of had to think of my stomach being that of a baby's stomach. We are real careful what we feed babies and that is how we have to be with ourselves, at least to start.

What do you suggest as far as items that are not certified gluten free but the ingredients are gluten free? And what do you suggest about items that are processed in the same facility as gluten containing products, but the area is cleaned before. Do you think that is okay?

AVR1962 Collaborator

What do you suggest as far as items that are not certified gluten free but the ingredients are gluten free? And what do you suggest about items that are processed in the same facility as gluten containing products, but the area is cleaned before. Do you think that is okay?

You will see this indicated on packaging, that they have been manufactured in a facility contianing gluten. I have tried 2 differnt products and both made me sick so I do not suggest it. Oats some rice based cereals are a perfect example of items that are considered gluten free but unless they are certified gluten-free I do not eat them, too much chance of CC in the factory.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,425
    • Most Online (within 30 mins)
      7,748

    Kcauley
    Newest Member
    Kcauley
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If you get tested for celiac disease be sure that you are eating lots of gluten daily in the 6-8 weeks before the test, otherwise you could get false positive results. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • trents
      Jula, terminology can be confusing and the terms "gluten sensitive" and "gluten intolerant" are used by different people to mean different things. That's why I stick to using "celiac disease" and "NCGS" (Non Celiac Gluten Sensitivity) because those are the technical terms used by the medical community and it eliminates the confusion. As you point out, regardless of whether you have celiac disease or NCGS, the antidote is the same - total abstinence from gluten. There is this misconception out there that NCGS is harmless, just uncomfortable and inconvenient so you don't have to be so careful as you do with celiac disease. I'm not so sure I buy into that. Especially since some experts in the field of gluten disorders believe that NCGS can transition into celiac disease. And even if it doesn't, there is at least anecdotal evidence that some with NCGS experience harm to non enteric body systems from continuing to consume gluten. We actually know more about how celiac disease engages the immune system than we do about  how NCGS engages the immune system. These two may not be as neatly separated as we historically have been used to thinking. Yes, it is true that gluten disorders can affect various organ systems and not just the small bowel but that may also be true of NCGS and not just celiac disease. I just think there are gray areas here we don't completely understand yet. The fact that you get this rash when you experience gluten contamination strikes me a being very telltale. Can you describe the rash? dermatitis herpetiformis has a characteristic appearance to it. The rash pimples have tiny pustules. Celiac disease is the only known cause for dermatitis herpetiformis. So, if you have dermatitis herpetiformis, you have celiac disease. Many dermatologists do not know how to properly biopsy dermatitis herpetiformis. So, if you pursue that route, do some research and find one who is experienced in this. And the other  problem typically is being able to arrange an appointment when you are having an outbreak. I suppose you could make an appointment and then plan on eating gluten just previous. I don't know where you live and what your medical system is like but as a U.S. based person I think of my doctors as working for me, not the other way around. I don't acquiesce to them just because they have a medical degree. I'm capable of doing my own research and making decisions that make sense to me. I'm the one who has to live with them. Of course, I certainly value the physician's input and will factor that into my decision making.
    • Jula
      Thanks, trents, for both the welcome and the perspective. That is exactly how I'm feeling at this point. The main reason I was considering this particular confirmation is because 2 primary care physicians, one an internist, had said this should be done because they could not be sure based on the information I have that it is celiac and not gluten intolerance. When I asked why that mattered, either way I would have to remain gluten free, the internist especially insisted that she would have to watch for a different set of repercussions on other organs. I could find no proof of this but the questions she raised made me think I should have a definitive diagnosis. But now knowing that it's more than a meal's worth of contamination needed, I don't think I can do it, although  the occasional contamination from eating at a friend's place or restaurant may still happen and if it does and I end up with the rash again, I could get that biopsied and have the same results, it seems. Thanks, again.
    • Kathleen JJ
      Thank you very much for the reply! As to the cheese sauce - I am not the cook at home, I'm very lucky that my husband takes on this monumental task. But how does one make a gluten-free cheese sauce? Isn't it always based on a mixture of flower and butter? I never achieved actually making it without burning it myself, but he makes it this way. Is it a question of just replacing with a different kind of flower?
    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
×
×
  • Create New...