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Does Anyone Else Have Anxiety With Celiac?


debgre

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debgre Newbie

I just found out that a biopsy that was taken during an endoscope in summer '06 showed the early stages of Celiac. The doctor decided that it must be from advil since my blood work was negative and didn't bother to tell me about the biopsy results until I asked for a copy of my records for a new alternative doctor that I was going to try.

I have been suffering for about 12 years with a lot of digestives issues including diarhea, weight loss, nausea, fast pulse with certain foods and the anxiety that comes with the diarhea at times. I was diagnosed as IBS after having my gall bladder removed.

I went gluten free for the first time this past week and was amazed that I didn't have any high pulse after I ate for the first time in years! Great right? Well, yesterday I ate some ice cream even though the alternative dr told me I was probably sensitive to casin. I figured that maybe it was just gluten that had been giving me all my trouble. Well, today I had diarhea followed by the anxiety and shakiness that comes along with it. I feel all keyed up and can't wind down. I also have trouble concentrating, feel almost like I am in a well, which makes it hard since I am a teacher!

Could it be that I need to give my body more time to recover eventhough I am eatting gluten free? Can you continue to have problems, symptoms, while eating gluten free? I know it is suppose to take some time to heal your insides but should I still continue to have such strong reactions? could the casin in the icecream have caused it?

I guess I just need to hear that this is a "normal" thing to deal with when you have Celiac. I am glad to finally have a diagnosis, I have been searching for so long for a reason besides the "it's all in your head or just IBS that I have heard for so long. I just wish I didn't have all of the negative thoughts and worries that come along with it too. I want complete relief and to be able to say that its over. (I know that it has really just begun but at least I know what I am fighting and I am not fighting myself anymore). Thanks for letting me vent and I am SO happy to have found this forum. My husband is very supportive but I don't want to keep burdening him with the same feelings and worries. I look forward to hearing your story and how you deal with the anxiety/fatigue/rapid pulse if you deal with it too.

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confused Community Regular

I get really bad anxiety from casein and gluten, but more so from casein. Does the ice cream u ate have gluten in it, many of them do. Most celiacs have to give casein up for 6 months, but if ur nd said that u are intlerant to casein it might be a life long thing. I would give up all casein asap. They do make casein and gluten free ice cream with rice or soy which you could try.

I Hated the anxiety more then the digestive problems of celiac. That i will never cheat on purpose, it was that bad. I had someone tell me once why dont u cheat u will only have to use the bathroom all day, what is bad with that. I was like cause i will have anxiety and panic attacks the whole time in the bathroom.

Keep track of what u eat that gives u the rapid pulse it might be other foods then just gluten and casein.

paula

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sickchick Community Regular

I used to get major anxiety when I was getting glutened. I still have anxiety but it's not as intense.

lovelove

sickchick

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YoloGx Rookie
I used to get major anxiety when I was getting glutened. I still have anxiety but it's not as intense.

lovelove

sickchick

I definitley get anxiety if I eat gluten or much in the way of sugary items not to speak of most milk products (except plain non fat yogurt). Chocolate is a real hurdle since its so addictive. Its easy to have too much and get anxiety even though it also has the good effects of magnesium.

I also get anxiety when exposed to certain cleaning agents and petroleum based chemicals or their combinations.

It often takes quite a while before your body settles down from being damaged by the gluten. The intestinal tract actually gets scarred and this creates leaky gut syndrome--and thus often allergy like symptoms to a whole host of things. In addition your nervous system isn't getting what it needs to be fed. This is major since it includes the brain and heart as well--and thus the anxiety attacks.

This is why I suggest taking bromelain/papain both with meals to digest them better as well as away from meals with L-glutamine to help heal the lining of the intestines. Ditto with soothing and healing herbs such as marshmallow root and slippery elm. I have discussed this elsewhere at length on celiac.com. Check out some of my posts if you are interested. You can also Google the herbs and find out more on your own.

I also suggest you take more B vitamins to help feed and calm down your nervous system. For me I find the Co-enzyme ones most effective--also taken away from food for some reason. Vit. D, E and K and Mag. as mentioned (taken with food) are also very important as life long supplements for celiacs. Be careful for yourself though with the mag since it can cause diarreah if you take too much. Plus its important to take essential fatty acids to feed the nerves etc.stressed from years of the celiac.

Yolo

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jerseyangel Proficient

Yes, anxiety is definately a symptom of Celiac (one of many).

I had constant anxiety and panic attcks prior to being diagnosed. It took a while for the anxiety to lessen even after I went gluten-free--probably 18 months before I saw a real difference. I tried antidepressants, but didn't want to live with the side effects and really wasn't comfortable taking them.

Now after 2 1/2 years, I only get the anxiety when accidently glutened.

As far as the dairy is concerned, Celiac damages the tips of the villi to the point where they can't properly digest dairy foods. I would suggest that you stay off dairy completely for 3-4 months to give your intestine a chance to heal. Then, try some and see how you do with it.

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fedora Enthusiast

I have had anxiety for years. Alot of times it involves having to go to the bathroom. I know some of it is from being a mom and some is from a terrible tragedy my family endured. But a lot of it was just crazy. I became afraid to take any tinctures, pills, supplements, etc. I knew some weren't good, so I stayed away from them. I was afraid. My immune reactions include anxiety. What fun that is. My Dr said I have an over active immune system. Really? He said I'd live a long time, just feel like crap through it. How reassuring. I feel so much better without gluten. Not once have I had an attack. And they are just downright scary. Good luck

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devo Explorer

Hi Marian,

I was just curious how long it took for your intestinal spasms to settle down after going gluten free? I have very similar symptoms to yours so I was curious when they calmed down for you.

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rsm Newbie

I found that lactose was a real problem for me after I gave up gluten. I am still gluten and dairy free after almost 11 months. I have severe anxiety problems! They are getting better, I think. Once you give up the gluten you may need to avoid dairy too.

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debgre Newbie

Thanks so much for the replies. I was having a horrible day yesterday and into the night with the rapid pulse. I really feel for all of us having to go through this but I keep telling my self the old saying that what doesn't kill you has got to make you stronger. I bet if we all who have to deal with this flexed our muscles we would be awesome! :P

I just got back from the homeopath and he gave me some new things to try as well to keep the anxiety level down. I really am "excited" to see how I am eventually going to feel going off the gluten after a long period of time. I know it wont be easy but I am glad I found this site, it helps to know that others are going thru the same thing! I am going to stay off the dairy too and see how it goes.

Just curious, I know some of you say it takes a year or more to feel good but do you at least start feeling a little better sooner? or does it come and go?

Again, thanks for the replies and listening to me vent. :)

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Ellenedec Newbie

Hi Deb,

I have only been sick for three years and finally was diagnosed with allergies to gluten,milk protein, nuts and sulfites and it was also discovered that I had hypothroidism. I also suffered from the anxiety,fatigue and rapid pulse. Have you been to an allergist to be tested for additional allergies? It reallly is amazing how much better you can feel if you can identify all food groups that could be problematic. My allergist told me that if I can refrain from eating any of my trigger foods it is possible that I can reintroduce them at a later date. I have found that milk products and nuts make me the most sick. The soy milk on the market now is really good and I don't even miss the real thing. Please don't stop researching your condition. I'll bet that you will uncover a few more allergies.

I just found out that a biopsy that was taken during an endoscope in summer '06 showed the early stages of Celiac. The doctor decided that it must be from advil since my blood work was negative and didn't bother to tell me about the biopsy results until I asked for a copy of my records for a new alternative doctor that I was going to try.

I have been suffering for about 12 years with a lot of digestives issues including diarhea, weight loss, nausea, fast pulse with certain foods and the anxiety that comes with the diarhea at times. I was diagnosed as IBS after having my gall bladder removed.

I went gluten free for the first time this past week and was amazed that I didn't have any high pulse after I ate for the first time in years! Great right? Well, yesterday I ate some ice cream even though the alternative dr told me I was probably sensitive to casin. I figured that maybe it was just gluten that had been giving me all my trouble. Well, today I had diarhea followed by the anxiety and shakiness that comes along with it. I feel all keyed up and can't wind down. I also have trouble concentrating, feel almost like I am in a well, which makes it hard since I am a teacher!

Could it be that I need to give my body more time to recover eventhough I am eatting gluten free? Can you continue to have problems, symptoms, while eating gluten free? I know it is suppose to take some time to heal your insides but should I still continue to have such strong reactions? could the casin in the icecream have caused it?

I guess I just need to hear that this is a "normal" thing to deal with when you have Celiac. I am glad to finally have a diagnosis, I have been searching for so long for a reason besides the "it's all in your head or just IBS that I have heard for so long. I just wish I didn't have all of the negative thoughts and worries that come along with it too. I want complete relief and to be able to say that its over. (I know that it has really just begun but at least I know what I am fighting and I am not fighting myself anymore). Thanks for letting me vent and I am SO happy to have found this forum. My husband is very supportive but I don't want to keep burdening him with the same feelings and worries. I look forward to hearing your story and how you deal with the anxiety/fatigue/rapid pulse if you deal with it too.

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MySuicidalTurtle Enthusiast

It has taken me years to bring my anxiety down and it still isn't gone! Things do get better.

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cyberprof Enthusiast

I had anxiety, rapid pulse and what felt like skipped heartbeats (but I knew it wasn't). I would lay down (to sleep or to nap) and feel my blood rush through my head and the anxiety would be overwhelming. Didn't want to go to the doctor because I didn't want "anxiety disorder" or "hypochondriac" on my medical record. The anxiety (and low-level depression) went away within the first month after going gluten-free. I had no idea that the pulsing could be my intestine but it makes sense now!

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darlindeb25 Collaborator

Anxiety has always been a very big symptom of my celiac disease. Funny how it is such a huge part for some of us and nothing for others. Isn't it amazing how different the symptoms are? I think my anxiety began, just as someone else mentioned, from the worry that a bathroom would not be close enough. My first horrible panic attack was over 25 yrs ago when my daughter was just a few months old and she had plugged tear ducts. We were discussing having minor surgery done to correct the problem and I had taken her to the doctor for the 3rd time, each time there was some medical reason why the surgery had to be cancelled. This time, I could not get out of the car, couldn't open the doors, just sat there and cried and cried. Over the years that panic and anxiety has changed and taken on many different faces, for a time, I even thought it was gone. I took medication for it, sometimes at the moment types, sometimes the daily type--Xanax, Paxil, Celexa. Now I keep Xanax on hand, finally a gluten free brand, since now we do know that Pfizer's does contain gluten and I was being glutened by my anxiety savior!

After 7 1/2 years of being gluten free, now when I get glutened, the first sign is anxiety, severe anxiety. One minute I am fine and the next, immediate non-stop tears, I start shaking, and then the fog hits and I can't think. At this point I can take Xanax and calm the anxiety within an hour or so, but am a zombie for hours and hours.

I am a worrier and I think that causes me to get anxious, which sometimes will cause mini panic. Most of the time, I can talk myself out of that type of panic. I have been at this for 25 yrs though. Still, when I do have a panic attack, I get upset with myself, trying to understand why it happens, and then I forgive myself because I really do believe it is out of my control. I believe years and years of undiagnosed celiac disease caused a chemical imbalance in my brain that may not repair and I have to learn to overcompensate for that defect, as we all may have to do. Maybe one day they will figure this all out.

I have terrible ringing in my ears and was told they can't find the cause, there is no connection to my ears that they can find. It was just announced recently, they have been studying this type of ringing and have found this to be true--it's not from the ears, its from the brain and they may soon find the connection!!!!! maybe they will find a connection for the anxiety too, we can hope!

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debgre Newbie
Anxiety has always been a very big symptom of my celiac disease. Funny how it is such a huge part for some of us and nothing for others. Isn't it amazing how different the symptoms are? I think my anxiety began, just as someone else mentioned, from the worry that a bathroom would not be close enough. My first horrible panic attack was over 25 yrs ago when my daughter was just a few months old and she had plugged tear ducts. We were discussing having minor surgery done to correct the problem and I had taken her to the doctor for the 3rd time, each time there was some medical reason why the surgery had to be cancelled. This time, I could not get out of the car, couldn't open the doors, just sat there and cried and cried. Over the years that panic and anxiety has changed and taken on many different faces, for a time, I even thought it was gone. I took medication for it, sometimes at the moment types, sometimes the daily type--Xanax, Paxil, Celexa. Now I keep Xanax on hand, finally a gluten free brand, since now we do know that Pfizer's does contain gluten and I was being glutened by my anxiety savior!

After 7 1/2 years of being gluten free, now when I get glutened, the first sign is anxiety, severe anxiety. One minute I am fine and the next, immediate non-stop tears, I start shaking, and then the fog hits and I can't think. At this point I can take Xanax and calm the anxiety within an hour or so, but am a zombie for hours and hours.

I am a worrier and I think that causes me to get anxious, which sometimes will cause mini panic. Most of the time, I can talk myself out of that type of panic. I have been at this for 25 yrs though. Still, when I do have a panic attack, I get upset with myself, trying to understand why it happens, and then I forgive myself because I really do believe it is out of my control. I believe years and years of undiagnosed celiac disease caused a chemical imbalance in my brain that may not repair and I have to learn to overcompensate for that defect, as we all may have to do. Maybe one day they will figure this all out.

I have terrible ringing in my ears and was told they can't find the cause, there is no connection to my ears that they can find. It was just announced recently, they have been studying this type of ringing and have found this to be true--it's not from the ears, its from the brain and they may soon find the connection!!!!! maybe they will find a connection for the anxiety too, we can hope!

Thanks for sharing your story with me Deb. It isn't easy dealing with this is it? I can handle a few minor panic attacks with it but what I can't handle is the way I feel for a day or 2 afterwards. My pulse will stay rapid and so contant that I can't sleep and I feel like a zombie with brain fog and trying to keep going with my daily life and responsibilities. Each time it happens I think I can't keep going thru this! I haven' slept but an hour this morning since Sunday night due to this. The guilt that you can't stop it is the worst. I hate not having control. I am going to go see my family doctor this morning and see if she will prescribe me something to help when it gets this tough. I just am very fearful that the side effects will be worse than just muddling thru! But I don't know what else I can do.

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YoloGx Rookie
Thanks for sharing your story with me Deb. It isn't easy dealing with this is it? I can handle a few minor panic attacks with it but what I can't handle is the way I feel for a day or 2 afterwards. My pulse will stay rapid and so contant that I can't sleep and I feel like a zombie with brain fog and trying to keep going with my daily life and responsibilities. Each time it happens I think I can't keep going thru this! I haven' slept but an hour this morning since Sunday night due to this. The guilt that you can't stop it is the worst. I hate not having control. I am going to go see my family doctor this morning and see if she will prescribe me something to help when it gets this tough. I just am very fearful that the side effects will be worse than just muddling thru! But I don't know what else I can do.

Yeah, guys. I think having medication for anxiety attacks is a good idea to have around. My sister is trying this out on my mother and I think basically its a good idea.

Nevertheless for myself taking the detox and anti fungal and intestinally soothing herbs I suggested earlier (you can check some of my previous posts) as well as probiotics and basic supplements makes all the difference. Plus of course following the sugar free cave man anti celiac diet.

And gads, swimming at the Y has been a godsend. I swim and use the jacuzzi and the sauna and I feel like a new woman!! Really its becoming addictive, it makes me feel that good rather than depressed, anxious and sore sore sore in my neck and back and joints if I haven't exercised enough or have been less than perfect with my diet.

Its my theory (and that of others---read the DANGEROUS GRAINS) that we celiacs are closer to the Hunter Gatherers of old so we NEED exercise as well as eating a more basic non-modern diet. A few days following a period of time when I am too busy to exercise are the worst. Ay--the headaches too!

When it gets bad and I am in the middle of it, initially before the herbs I have found eating a bunch of celery and/or taking baking soda in water really helps. It seems like my body gets too acidic and this affects my emotional body and nervous system.

I have to admit though I like my gluten free teff/quinoa/amaranth etc. pancakes. They seem to calm me too. Something to do with a tendency towArds low blood sugar I think--also common with celiac. I use 1/2 flours and 1/2 cooked quinoa and a little tapioca flour to make it stick together. I make sure I wash the quinoa twice before cooking to remove whatever it is that's on the surface of the grain--some kind of growth inhibitor that is bad for us humans. I use melted coconut oil and water, no eggs (since I am allergic) and baking soda to make it rise. I panfry it on a iron skillet using butter since the coconut oil seems to burn easier. I usually eat the pancakes with nonfat organic yogurt and a little fruit with stevia and a hearty sprinkling of washed sunflower seeds. (My ex has to sprout the seeds.) I usually make enough to last for several days and sometimes cook an extra pancake for the next day if I have to get going earlier and faster.

Seems I need some heavy carbs like that in the morning and for lunch I then need meat and veggies with potatoes or yams. It gets me on an even keel for the day. Being a celiac vegetarian in the past just didn't work for me at all speaking of anxiety and the rest!

Again though eating lots of fresh veggies really helps calm anxiety for me in general.

Whats really weird is realizing how much I am like my mother and how hard it was to deal with her growing up in her household. She thought she was over her childhood allerigies but actually she wasn't--it affected her nervous system and emotions and eyes. And now too her skin and memory. Which by the way is starting to improve! Now that I am living here and have her off gluten. Am thinking of getting her on the herbs too since she still insists on having her cookies and chocolate to give her a boost.

Yolo

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Discovery Rookie
I just found out that a biopsy that was taken during an endoscope in summer '06 showed the early stages of Celiac. The doctor decided that it must be from advil since my blood work was negative and didn't bother to tell me about the biopsy results until I asked for a copy of my records for a new alternative doctor that I was going to try.

I have been suffering for about 12 years with a lot of digestives issues including diarhea, weight loss, nausea, fast pulse with certain foods and the anxiety that comes with the diarhea at times. I was diagnosed as IBS after having my gall bladder removed.

I went gluten free for the first time this past week and was amazed that I didn't have any high pulse after I ate for the first time in years! Great right? Well, yesterday I ate some ice cream even though the alternative dr told me I was probably sensitive to casin. I figured that maybe it was just gluten that had been giving me all my trouble. Well, today I had diarhea followed by the anxiety and shakiness that comes along with it. I feel all keyed up and can't wind down. I also have trouble concentrating, feel almost like I am in a well, which makes it hard since I am a teacher!

Could it be that I need to give my body more time to recover eventhough I am eatting gluten free? Can you continue to have problems, symptoms, while eating gluten free? I know it is suppose to take some time to heal your insides but should I still continue to have such strong reactions? could the casin in the icecream have caused it?

I guess I just need to hear that this is a "normal" thing to deal with when you have Celiac. I am glad to finally have a diagnosis, I have been searching for so long for a reason besides the "it's all in your head or just IBS that I have heard for so long. I just wish I didn't have all of the negative thoughts and worries that come along with it too. I want complete relief and to be able to say that its over. (I know that it has really just begun but at least I know what I am fighting and I am not fighting myself anymore). Thanks for letting me vent and I am SO happy to have found this forum. My husband is very supportive but I don't want to keep burdening him with the same feelings and worries. I look forward to hearing your story and how you deal with the anxiety/fatigue/rapid pulse if you deal with it too.

THANK YOU for putting your experience down. What a relief to read my story almost verbatim...here is a place where we are free to be Swans. You are not a burden, ever. I tell my husband here and there, too and even asked him if he'll leave me now that I am in this disease and struggling with diet and post gluten-free diet and LARGE array of subsequent symptoms. I too am very confused and unable to find information as to HOW LONG DOES IT TAKE to not be sick with a laundry list of illnesses? Many left and now several new ones are here....I feeling like my body is spewing out MORE toxins than ever, my anxiety talking. I too would LOVE to hear what is "normal." thank you again.

struggling post gluten-free-diet just like you in CA

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silk Contributor

I was diagnosed with anxiety and depression 9 years ago when I was first diagnosed with type 1 diabetes. At that time I thought it was just another wonderful inheritance from my mother's side of the family because almost everyone in the family has it. My brother was just diagnosed with bipolar disorder.

However, I now wonder. Mom, her brothers and sister, both grandparents and both of my brothers all had stomach problems and I remember that my mother had D often. So maybe the anxiety wasn't the only 'lovely' that I inherited.

I treat with medication and do very well but have my moments. My biggest source of anxiety right now is about food. Afraid to each much of anything for fear that I will react to it. Know enough about the sources of gluten to avoid that but I am suspecting that there are other tolerance issues. For instance, what I ate for dinner last night was fine and I did okay with it. I was fine this a.m. with no GI problems and I ate leftovers from dinner lastnight and now I am miserable. ????? Wonder if cardboard is gluten free?

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Ken70 Apprentice

Anxiety - Ah, my favorite subject.

I was 16 when I first felt it. I'm not sure it was gluten or the prospect of heading off to boarding school. Exercise was the only thing that got me through it. It made me a great swimmer......

Fast forward to 12 months ago (21 years if you must know) and things had become dire. Somehow, with some luck and determination I discovered that bread was the thing making me......not well.

I'm still in the middle of this journey but have learned enough to share what I have learned with others. My anxiety is gone. Really, it's gone. Depression isn't even on the radar any more. Yours WILL go away too.

For alot of us on this site gluten intolerance is almost a religious experience. Once discovered we want to share it with the world. We can't help but feel IT is this answer to so many problems we as westerners face today.

There is so much individual advice on this site that goes beyond eliminating gluten. Most of it really pertains to the individual that is giving the advice. I think we need a broader approach. I recommend "An Eaters Manifesto" by Michael Pollen. It never mentions gluten but his biggest point is that man fell down when he switched from "leaves to seeds".

"Eat "food", mostly plants, not too much."

You are not alone.....but you CAN get rid of your anxiety if you want. Good luck.

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YoloGx Rookie
I was diagnosed with anxiety and depression 9 years ago when I was first diagnosed with type 1 diabetes. At that time I thought it was just another wonderful inheritance from my mother's side of the family because almost everyone in the family has it. My brother was just diagnosed with bipolar disorder.

However, I now wonder. Mom, her brothers and sister, both grandparents and both of my brothers all had stomach problems and I remember that my mother had D often. So maybe the anxiety wasn't the only 'lovely' that I inherited.

I treat with medication and do very well but have my moments. My biggest source of anxiety right now is about food. Afraid to each much of anything for fear that I will react to it. Know enough about the sources of gluten to avoid that but I am suspecting that there are other tolerance issues. For instance, what I ate for dinner last night was fine and I did okay with it. I was fine this a.m. with no GI problems and I ate leftovers from dinner lastnight and now I am miserable. ????? Wonder if cardboard is gluten free?

I have often had the same experience--it can be either a heightened mold/fungal allergy or what you ate last night was OK to eat once in a while but not every day. I have both. You might too. You can check it out by eating very simply with foods you are not likely to be allergic to (I suggest a cave man diet ), or actually going on a fast, and then come out of it doing a challenge one food per couple of days with lots of notes including taking your pulse (Coco pulse test) and noting how you feel. I discovered certain combos were bad but by themselves they were OK. In time however I have fewer food sensitivities, though the gluten thing stays and is even more nitty than I ever thought.

Yolo

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silk Contributor
I have often had the same experience--it can be either a heightened mold/fungal allergy or what you ate last night was OK to eat once in a while but not every day. I have both. You might too. You can check it out by eating very simply with foods you are not likely to be allergic to (I suggest a cave man diet ), or actually going on a fast, and then come out of it doing a challenge one food per couple of days with lots of notes including taking your pulse (Coco pulse test) and noting how you feel. I discovered certain combos were bad but by themselves they were OK. In time however I have fewer food sensitivities, though the gluten thing stays and is even more nitty than I ever thought.

Yolo

Thanks Yolo, for the advice. I went back on cream of rice cereal, which I seem to tolerate pretty well. I will do that for a few days with nothing to drink but water or rice milk, and take it from there. Desperate to feel better so I am willing to try anything.

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      What kind of stool test was done? Can you be more specific? 
    • mishyj
      Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.
    • mishyj
      My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!
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