Jump to content

  • 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

Please Help!

arkoflove

Recommended Posts

arkoflove Apprentice
arkoflove
Posted

I have been gluten free (save cc incidents) for a good 6+ weeks now. I started to get way better, and then went downhill again. I have an appt with a GI on Monday to really get into all of this. I went gluten free after positive Anti-Gliadin tests (both IGA and IGG). My other tests on the celiac panel were negative tho.

I have cut out milk from my diet, as it seems I have lactose intolerance (discovered after going gluten-free). I still end up feeling really aweful in the evenings...I have been bloating up, struggling with consitpation and thin stools...Almonds and macadamia nust give me the big D...

How do you know if you are Casien sensitive and in what foods do I find that?

I have been eating a lot of chicken, eggs, soymilk, tea, decaf coffee, and soy/whey protein shakes. I am wondering if it is the caffine giving me the shakes and fatigue as the day wears on?

I tend to feel SO tired so much of the time. My arms feel heavy. It feels like such effort to move sometimes. A few months ago I was struggling with GI issues before going gluten free, but I had energy, and I was excercising and in great shape.

I feel like my body is giving out on me. I am getting very afraid- what if I have cancer? Why am I so messed up after I had begun to improve?

I try to stick to a very basic diet, but then I give in to cravings (chocolate, almonds, ect) and feel even worse.

What should I address with the dr on Monday? I wish they were doing the endoscopy immediately, waiting is making this even harder for me.

I feel like this is SO ridiculous, no one in my family has any food allergies or intolerances, and all this has shown up gradually over the past 2 years for me.

Thanks in advance,

Megan

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Hi Megan,

You sound to me like you have other food intolerances. Main ones are soy, nuts, eggs, etc. Also, you may not think so but you might also be having cross contamination issues also. Do you share a gluten kitchen or gluten free? Have you replaced your teflon pans, cutting boards and any wooden utensils? Have you checked your shampoo, lotions and makeup?

Hang in there.

arkoflove Apprentice
arkoflove
Posted
  • Author
Hi Megan,

You sound to me like you have other food intolerances. Main ones are soy, nuts, eggs, etc. Also, you may not think so but you might also be having cross contamination issues also. Do you share a gluten kitchen or gluten free? Have you replaced your teflon pans, cutting boards and any wooden utensils? Have you checked your shampoo, lotions and makeup?

Hang in there.

I don't have any teflon pans...changed my makeup, don't share cutting boards. Really have just been eating eggs cooked in a stainless steel pan, and costco rotisserie chicken...I got cc'd with milk in a latte last week, and ate choc chips that threw me for a loop, and am only now starting to use the restroom slightly normally now. After eating the nuts my stomach is churning.

I don't really know where to go with my diet now...should I cut out soy, eggs, and (obviously) nuts? I really feel at a loss as to what to eat if I do that.

Could stevia cause issues too? I use that in my tea and coffee. Decided to put it away for now after how terrible I feel today.

Thanks for your reply!

ravenwoodglass Mentor
ravenwoodglass
Posted

I would cut the soy out for a bit and see if that makes a difference. If you don't improve after a week or two then take out casien. Casien will be clearly labeled on products as it is a form or dairy and is often found in lactose free products as well as margarine and other stuff.

You are early in the diet, are you eating mostly unprocessed foods? That is a good way to start out. Also do check and make sure the tea your drinking is gluten free. You also need to check any scripts, OTC and supplements you take. You could have another intolerance, which is not uncommon, or you may be still getting gluten somewhere.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Megan,

I would say you have a problem with nuts so quit them. I get glutened with rotissire chicken. I would start the elimination diet and keep a food diary of everything you eat and drink for about say 2 weeks. That is nothing but whole foods like fish, chicken, meat, veggies, nothing processed. Take out all dairy, soy, eggs, etc. Add 1 food back in evey 2 to 3 days also try to eliminate msg.

Type elimination diet in the search engine and you will find out more info.

I haven't tried stevia yet, but the only sweetner I can use without making me sick so far is splenda. I have problems with the others, as well as pure sugar. Chocolate even bothers me to the point i'm in the bathroom for a while if I eat a quarter of a bar.

It's just a process of elimination. Hang in there I know it's frustrating but you will get to feeling better.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted

To start with, if you think you're casein-intolerant, eliminate the soy/whey protein shakes. Whey is from milk and is considered contaminated with casein by most people here: https://www.celiac.com/gluten-free/index.php?showtopic=23952 You may find that getting rid of this one item is all you need to do. But I agree with the other posters suggesting that giving up soy at least temporarily is probably a good idea. And that eating whole foods you cook yourself (chicken, rice or potatoes, a variety of vegetables, seasoned with salt and pepper only) is the best approach. Good luck!

I have been gluten free (save cc incidents) for a good 6+ weeks now. I started to get way better, and then went downhill again. I have an appt with a GI on Monday to really get into all of this. I went gluten free after positive Anti-Gliadin tests (both IGA and IGG). My other tests on the celiac panel were negative tho.

I have cut out milk from my diet, as it seems I have lactose intolerance (discovered after going gluten-free). I still end up feeling really aweful in the evenings...I have been bloating up, struggling with consitpation and thin stools...Almonds and macadamia nust give me the big D...

How do you know if you are Casien sensitive and in what foods do I find that?

I have been eating a lot of chicken, eggs, soymilk, tea, decaf coffee, and soy/whey protein shakes. I am wondering if it is the caffine giving me the shakes and fatigue as the day wears on?

I tend to feel SO tired so much of the time. My arms feel heavy. It feels like such effort to move sometimes. A few months ago I was struggling with GI issues before going gluten free, but I had energy, and I was excercising and in great shape.

I feel like my body is giving out on me. I am getting very afraid- what if I have cancer? Why am I so messed up after I had begun to improve?

I try to stick to a very basic diet, but then I give in to cravings (chocolate, almonds, ect) and feel even worse.

What should I address with the dr on Monday? I wish they were doing the endoscopy immediately, waiting is making this even harder for me.

I feel like this is SO ridiculous, no one in my family has any food allergies or intolerances, and all this has shown up gradually over the past 2 years for me.

Thanks in advance,

Megan

GFinDC Veteran
GFinDC
Posted

I suppose you have checked the ingredients list on the nuts you are eating? They could have some form of gluten added during processing, especially if they coated with something. Or they could be cc if processed on line that also processed gluten items.

Casein is a protein in dairy. So most dairy product are likely to have some. I have a pretty strong reaction to casein. It keeps me wide awake for a long time. Casein also does a number on my gut, but it is a slower reaction than gluten. Lactose always made me very gassy, but casein not as much. Of course your symptoms could be completely different. Hard cheese should be mostly casein and little lactose.

I second the soy avoidance idea. Do some searching on soy and thyroid and see what you think. Or maybe search on soy and rat.

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

Celiac.com Sponsor (A8-M):


arkoflove Apprentice
arkoflove
Posted
  • Author

Could using large amounts of stevia be my issue?

grainfree Newbie
grainfree
Posted

Many, many on this forum have experienced a honeymoon phase after eliminating gluten to find other food intolerances and allergies emerge. In myself, at one point I thought I was having an anaphylactic reaction to peanut and found it was highly seasoned rotisserie chicken causing the severe reaction. Since then I have found that cravings are starting to disappear with a diet somewhat close to the specific carbohydrate diet which is very much like your diet now. All the other posters have given good advice. Questions about which foods are causing illness can be frustrating and lead to impatience and fear, but please try not to worry. Things may seem a little overwhelming right now, but bring all your questions to your doctor so she/he can address them, and may then advise you about possible further testing. Be well. Edit: It may be that any large amount of anything could cause problems. Only a few more days 'til Monday!!

ravenwoodglass Mentor
ravenwoodglass
Posted
Could using large amounts of stevia be my issue?

If you think the Stevia may be an issue cut it out for a couple of weeks. Also are you using pure stevia or is a mix of stevia and something else? Are you allergic to ragweed? Stevia is related to ragweed and if you are allergic to ragweed you might react to stevia also. If you do decide to drop stevia I would not replace it with sugar alcohols as many even without GI problems have D and gas from sugar alcohols. If you are going with a sugar replacement because you have slightly elevated blood sugar levels and fear developing Type 2 diabetes be aware that when we are ill with anything that will often raise the blood sugar levels. That includes being glutened for some of us. I got prematurely diagnosed with diabetes when a doctor did a blood test when I went to him for help after a severe glutening. My A1C and subsequent testing revealed that I was actully in the normal range.

ang1e0251 Contributor
ang1e0251
Posted

The worst glutening I ever experienced was from individual packets of stevia. Look at the ingredients of what you're using. The packets had wheat.

Now I use pure stevia extract, quite a lot, every day. I have no problems with it.

arkoflove Apprentice
arkoflove
Posted
  • Author

ravenwoodglass- thanks for your reply. I believe that everything in my diet has been gluten free (save my cc's with what I believe were chocoate chips and mrs butterworths sf syrup) The nuts and tea are gluten free.

The stevia definately was gluten free.

txplowgirl- definately cutting out the nuts! OY. So sad though, I love them. I may do an elimination diet after my Dr. appt, I want them to be able to have accurate test results if they do bloodwork. I really appreciate your info on this!

grainfree- yes, only a few more days! The waiting stinks!

Thank you everyone for your replies. Talking on here is helping me get through everything. It's a difficult journey.

arkoflove Apprentice
arkoflove
Posted
  • Author

So soy is definately a problem for me, I cut it out for a short amount of time, or at least significantly reduced my intake. Yesterday I took a bite of a soy protein bar, and right away my throat and nose started itching and I started to sneeze. This morning I put some in my tea, and I had the same response! It cleared up after a little while. So that would indicate an allergy, right? Would this have an impact on my digestive sysetm also?

  • 2 weeks later...
GFinDC Veteran
GFinDC
Posted

Hi Ark,

Sounds like it could be an allergic reaction to the soy. I am not sure if you would react in your gut also. I think if you are having a negative reaction of any kind to a food it is probably a bad idea to continue eating it. It seems to me the reactions tend to get stronger with further exposure. Soy is a risky thing for us IMHO.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    3. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    4. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
    5. Scott Adams
      - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,091
    • Most Online (within 30 mins)
      7,748
    Condon
    Newest Member
    Condon
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Celiac Screening

      By Scott Adams · Posted

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.