Hope for Super Sensitive?

[NightSky]

Hi,

I gave up gluten five years ago and have gradually been learning how to avoid cross contamination. Five months ago I started to get gluten reactions back to back and have only twice made it through two weeks without an obvious gluten reaction.  I haven't been able to tolerate gluten free bread for a couple of years and recently went grain free which I believe helps. However, I have still been getting glutened up to twice a week. For instance, from airborne gluten (driving through a wheat field that was being harvested and walking past the air vent of an industrial sized bakery) and last night I got sick from cooking in my oven which had had a pizza cooked in it by my family - a rookie error, I know. I have finally got an agreement that my family won't use the oven for gluten and won't eat bread in the house, just cereal but this last one was the straw that broke the camel's back. I am losing hope that I will get a chance to heal. I live a few doors away from a Papa John's and on the other side is a pub kitchen. I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat (I react to beans/eggs/soy and need to do a dairy challenge) but I am CONSTANTLY ill.  I am even scared today to breath outside my house because of the Papa John! I have a young baby to care for and it's sunny outside but I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive.

P.S. I am not diagnosed as I didn't know about celiac or NCGS etc when I gave it up. I am working with a dietician who very much approved of the range of nutrients I was getting, understands gluten etc. She wants us to find a way to get a kind of diagnosis and I am grateful but I know that I am on my own really because I have to be able to manage my environment. 

Have any super sensitives managed to go for any length of time without being glutened?

[Gemini]

11 minutes ago, NightSky said:

Hi,

I gave up gluten five years ago and have gradually been learning how to avoid cross contamination. Five months ago I started to get gluten reactions back to back and have only twice made it through two weeks without an obvious gluten reaction.  I haven't been able to tolerate gluten free bread for a couple of years and recently went grain free which I believe helps. However, I have still been getting glutened up to twice a week. For instance, from airborne gluten (driving through a wheat field that was being harvested and walking past the air vent of an industrial sized bakery) and last night I got sick from cooking in my oven which had had a pizza cooked in it by my family - a rookie error, I know. I have finally got an agreement that my family won't use the oven for gluten and won't eat bread in the house, just cereal but this last one was the straw that broke the camel's back. I am losing hope that I will get a chance to heal. I live a few doors away from a Papa John's and on the other side is a pub kitchen. I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat (I react to beans/eggs/soy and need to do a dairy challenge) but I am CONSTANTLY ill.  I am even scared today to breath outside my house because of the Papa John! I have a young baby to care for and it's sunny outside but I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive.

P.S. I am not diagnosed as I didn't know about celiac or NCGS etc when I gave it up. I am working with a dietician who very much approved of the range of nutrients I was getting, understands gluten etc. She wants us to find a way to get a kind of diagnosis and I am grateful but I know that I am on my own really because I have to be able to manage my environment. 

Have any super sensitives managed to go for any length of time without being glutened?

Have you seen a doctor to figure out what is wrong?  If you don't know for certain you have Celiac, then you don't know what really is wrong.  The situations you listed for being glutened should not cause any reaction, no matter how sensitive you think you may be.  You need to ingest it to cause a reaction and cannot be glutened from walking past a bakery or pub. I have no doubt you are as sick as you say you feel but your symptoms of being too weak, tired  and depressed are serious symptoms and should be addressed by a doctor.  They can be symptoms of many things and you may be missing something else.  You say you are caring for an infant....is this your child?  Is it possible you may have postpartum depression?

I think the fact you say you are constantly ill means you really need to see a doctor to find out what is wrong. If you actually do have Celiac and are eating gluten free, you should not be constantly sick. I wish you well but please see a doctor......you have a young baby to care for. 

[kareng]

I agree with Gemini.  I think you need to see a doctor and find out what is really wrong with you.  I doubt, even if you have celiac, that that is what is causing all these issues.

[NightSky]

I am a little surprised by your responses but thank you for your concern nevertheless. I have been feeling depressed since this morning. It could be postpartum depression but the onset of this depression pretty much coincides with a few hours after eating food cooked in a gluteny oven! I also know that when I can go for two weeks or more without eating gluten, I feel great. 

When people give up gluten, there is a steep learning curve which can continue for some time. There is also a range of sensitivity. Not all are able to tolerate many "gluten free" foods. Sharing a kitchen with gluten eaters poses additional hazards. I have noticed many DH sufferers in particular, on this forum mentioning that they aren't able to tolerate grains and the Dr Fasano study on eliminating cross contaminated foods looks promising to me.

I am surprised about your certainty that it is safe to breath in visible clouds of wheat. Have you seen this: Open Original Shared Link

As I said, my dietician is working to get me some help. This will involve approaching my doctor and I am open to this but a biopsy is out of the question at this stage of sensitivity. Yes, of course there may be other factors but after five years of trial and error, I am quite familiar with what gluten does to my body. A doctor isn't going to be able remove the need for avoiding gluten and my post was about whether it is possible to do that sufficiently to stay well.

This is the first time I have posted here and if I am honest, I am feeling quite misunderstood. 

I do appreciate you taking the time to reply though and that you are encouraging me with my engagement with doctors.

[cstark]

I do understand that when your world all of the sudden turns upside down inside out, and you don't know where to turn.  However, I do strongly suggest making an appt. to see your primary MD to see if there are any underlying issues whether it be completely from gluten or whether there is another trigger somewhere that has just come up.  For me right now, it is not just gluten that causes the episodes I have even though it is a BIG trigger.

I do agree with the others that a lot of time I have to ingest the gluten to react.  However, if I breathe in a trigger a lot my body goes into an episode.  I get both sides of the discussion, and it is frustrating. 

Don't give up, though.  See what your doctor says with these vast of rapid symptoms you are having.  Also, something to think about is the depression.  You mentioned post partum depression, and I do congratulate you on the new little one.  Hormones for me can play a major part in some of my episodes, so your body might be ultra sensitive right now as your hormones may still be trying to level out after your baby's arrival. Your body has gone through a tremendous change, so give it time to return to normal or find a new normal.

I do not know what your symptoms are, but the essential oil Frankisense may help to at least lessen the degree of your symptoms.  Have you thought of going to Healing Touch therapy to help bring your systems back into alignment?  Many tend to think Healing Touch to veer toward being voodoo, but it has helped me in the scientific physiological sense to keep all systems turned on. I encourage you to do some research on Healing Touch and come up with your own opinion on it. If you would like some more info on it, I will be glad to share how it has helped me.  Best of all to you, and I will be praying for you.  Keep communication open with your family as they may be your biggest source of support during this tough time.

[Jmg]

1 hour ago, NightSky said:

I am too weak, tired and depressed to do anything. Is there any hope for a (potentially) super sensitive?

I'm not super sensitive so the following may not be of much use! I do suffer from depression however and one thing which can help is taking action, not just the action itself but the feeling that you are making positive steps. So, you could change travel plans to avoid the wheat fields during harvesting and if you cant do that get a dustmask for the car so you can wear it in extreme circumstances. Worked for the farmers! Get a Open Original Shared Link which is just for you, they're great, super quick and cheap and that way you can relax and not worry about cross contamination. For shared kitchens just have your own pan, chopping board and some non wooden utensils for cooking and keep them separate. Massively reduces your contamination chances and reassures you also. 

For:

1 hour ago, NightSky said:

I just CANNOT face eating any more because I spend all day cooking from scratch vegetables, fruit, meat

Make extra big meals and freeze them in individual portions. It takes the same time to make a lot as a little and that will give you some extra time away from the stove!

I wouldn't worry about the pizza place unless your stood right under the outlet fan as you were in your bakery episode and the sunlight will also help with your mood. As will exercise, doing something you enjoy and yes, a good diet. You can include foods that boost serotonin levels for instance and make sure you take a good multivitamin. 

Take some steps where you can and don't worry about things you can't control.

Finally, the two posters above are both super experienced and helped me a lot. So do follow their suggestion about the doctor. 

Best of luck

 

[kareng]

51 minutes ago, NightSky said:

I am a little surprised by your responses but thank you for your concern nevertheless. I have been feeling depressed since this morning. It could be postpartum depression but the onset of this depression pretty much coincides with a few hours after eating food cooked in a gluteny oven! I also know that when I can go for two weeks or more without eating gluten, I feel great. 

When people give up gluten, there is a steep learning curve which can continue for some time. There is also a range of sensitivity. Not all are able to tolerate many "gluten free" foods. Sharing a kitchen with gluten eaters poses additional hazards. I have noticed many DH sufferers in particular, on this forum mentioning that they aren't able to tolerate grains and the Dr Fasano study on eliminating cross contaminated foods looks promising to me.

I am surprised about your certainty that it is safe to breath in visible clouds of wheat. Have you seen this: Open Original Shared Link

As I said, my dietician is working to get me some help. This will involve approaching my doctor and I am open to this but a biopsy is out of the question at this stage of sensitivity. Yes, of course there may be other factors but after five years of trial and error, I am quite familiar with what gluten does to my body. A doctor isn't going to be able remove the need for avoiding gluten and my post was about whether it is possible to do that sufficiently to stay well.

This is the first time I have posted here and if I am honest, I am feeling quite misunderstood. 

I do appreciate you taking the time to reply though and that you are encouraging me with my engagement with doctors.

I get it.  `Nevermind.  There isn't anything I can help you with.  I am not starting that up again!

 

 Of course we never said you should breathe in visible wheat flour!  That could certainly be ingested.  You were talking about a store down the street glutening you if you went our your door.  That is different.  I hope you figure out a way to live a nice life - for your sake and your children's.

[pipermarau]

hey, NightSky, when i went gluten free i had to get on vitamins for two years to help my body heal.  i know you are going to see a doctor based on the comment thread, so while you are there get a blood test done to see how your vitamin levels are.  my B12 was so low i was sickly.  even had to cut off all my hair because i was too exhausted to wash it and brush out tangles.  it was a nightmare.  since you are living right next to places that prepare food my best suggestion is to relocate asap.  if you've got a while before your lease ends (if you do not own your home) save up some money and patch the place up as good as you can if you are entitled to deposit refunds to assist with moving fees.  as a sensitive celiac i can honestly say you are living in a danger zone for your health.  yes, you can inhale the dust and get ill from it and constant inhalation can keep you down no matter how healthy you eat at home and try to avoid CC in your own kitchen.  there is not much you can do about driving past a wheat field except make sure your car's a/c vent is set to inside air, not outside intake.  outside flow does save on gas but you are possibly sucking in wheat particles if you are using that feature.  also keep the windows rolled up.  i'm not going to say wear a mask, but if you can move to a safer home for your health and all that is left to bother you is the field and grocery shopping, it is perfectly fine to keep a mouth filter when you drive past that field and in the grocery store if you have to go by the bakery.  the bakery would make me sick when i shopped during their main cooking hours.  i try to shop late when they are closing that section down when i need to stock up on food.  there is less dust in the air and it might help.  if you feel weird wearing a little mouth cover in the store maybe write on it that you have a food allergy with a smiley face that way people can see you're just protecting yourself and not contagious with anything they should be worried about.  you can get a box of those filters at most stores in the cleaning aisle or just go to a hardware store and get some there.  since you also recently had a baby you need to take extra care of your immune system and you ought to be taking vitamins anyway.  if you are feeding baby naturally then you are losing a lot of your nutrients as it is and you need the boost.  when you buy prepackaged foods check the label for equipment warnings.  if it says made on shared equipment train yourself to put it back on the shelf and just don't even risk it.  buy only from companies that are dedicated gluten free if you can.  you can buy more online that is certifiably safe if that is an option for you.  also, call the companies if they don't label or if you want to know more about how they use a shared facility to evaluate your chances of being glutened by accident.  you are not crazy, this is not in your head.  one other major thing that turned around my health was ditching all my old beauty and cleaning products and switching to natural.  i use Dr. Bronner's soaps, liquid for cleaning, bar soap for shower.  i also use Kiss My Face Olive Oil soap.  it only has salt, olive oil, and some alcohol that gets cooked out through processing.  you might have a chemical allergy that you did not know about before you went gluten free because your body was handling too much at once.  now you can start to eliminate potentially offensive products in the house.  i hate to say it but, say goodbye to things like airwick, febreeze, and cheap scented air fresheners and candles.  find a holistic store that sells candles that are made with natural oils instead of synthetic.  it could change your whole life.  another thing to do is make sure you never ever put 409 cleaner in your microwave, fridge, and oven.  in fact, the Dr. Bronner's or Dawn Original will get the cleaning done as good as 409 and similar products.  if you used industrial type cleaner in the microwave, get rid of it and start fresh with a new one and make sure you clean it with only dawn and water or Bronner's Babysoft unscented soap.  

 

i hope that helps.  i'm pipermarau on here and i don't sign on much but if you want to talk to someone i'll check my messages more often.  i had to totally clear out my house so i can help direct you towards some more friendly products.  as for bread, i'm sorry about that one.  i have a similar issue with it digesting hard and i can't find a bread alternative that works for me.  while i can eat some grains it seems that in bread form they don't agree with my system.  i also went gluten free with my pets.  if you have pets, try that, too.  their saliva can sometimes get you right after they eat.  i really hope your doctor can help and that this info can help, too.  i managed to survive a shared kitchen and i can help with that, too, but this is already a long reply.  if you feel like you need some more ideas there just let me know.

 

best of luck!!

[cyclinglady]

If you are certain that gluten is an issue, then ask your doctor to run a celiac panel.   I did when I was glutened last year.  My "glutened" symptoms changed so much that both my GI and I suspected something other than celiac disease flare-up, but blood tests revealed that I had gluten exposure.  This may be your chance to get a diagnosis.  

Also, sick people come first in our house.  Everyone in your household, in my opinion, should be gluten free until your health improves or you learn to manage a shared house safely.  

I wish you well.  

[Gemini]

Not to beat a dead horse here but I looked at the linked article you provided and it talked about exposure to animal feed in enclosed spaces, not driving or walking near wheat fields on a windy day.  Unless you are a farm hand, feeding cattle or horses with gluten containing feed in an enclosed, non-well ventilated area, it's not an issue.

The Fasano diet is a short term diet for those who are slow to heal. Some people do have problems with grains and they found that putting them on a whole foods diet only, many of them went on to heal and could then consume processed gluten free food items like bread.  Lots of people do this in the beginning for faster healing. But it only works for people with Celiac Disease and you aren't even sure that is what the problem is.

I posted this so anyone new to the diet reading these things will not become confused and think you cannot walk past a wheat field or a bakery. Inhaling visible wheat flour in a bakery is not a good idea for anyone with Celiac Disease and will make you sick/react and you won't be able to work in one but walking past bread or any gluten containing food is not cause for concern.

[NightSky]

1 hour ago, Gemini said:

Not to beat a dead horse here but I looked at the linked article you provided and it talked about exposure to animal feed in enclosed spaces, not driving or walking near wheat fields on a windy day.  Unless you are a farm hand, feeding cattle or horses with gluten containing feed in an enclosed, non-well ventilated area, it's not an issue.

The Fasano diet is a short term diet for those who are slow to heal. Some people do have problems with grains and they found that putting them on a whole foods diet only, many of them went on to heal and could then consume processed gluten free food items like bread.  Lots of people do this in the beginning for faster healing. But it only works for people with Celiac Disease and you aren't even sure that is what the problem is.

I posted this so anyone new to the diet reading these things will not become confused and think you cannot walk past a wheat field or a bakery. Inhaling visible wheat flour in a bakery is not a good idea for anyone with Celiac Disease and will make you sick/react and you won't be able to work in one but walking past bread or any gluten containing food is not cause for concern.

You say with considerable certainty that unless the airborne exposure mimics the exact conditions in the study about two farmers, that it's not an issue. This was one study that indicated how airborne wheat can cause a problem. Now I'm not suggesting that being in the same room as bread, or being near a wheat field on a windy day causes gluten reactions. However, to state as fact that a lesser degree of exposure "is not an issue", I think is not my idea of responsible. I am still ascertaining what level of gluten I can handle and thank you yes, I have no idea what is wrong with me, I only know that on a day when I only ate homemade broccoli soup with salt, no stock and a glass of orange juice, a combine harvester literally sprayed wheat across the road in a cloud which I drove through. Two hours and forty minutes later I suddenly looked six months pregnant, stomach symptoms and redness and blisters started forming on my face. All of these happen whenever I have eaten gluten. I can't say what caused it on that one occasion. I only know that for me, I will be careful in similar circumstances. 

I came on here because I was having a really hard time and I was seeking support, hope really. I appreciate the supportive messages that have been posted. I really didn't want to get into disagreements about whether my experiences have been verified in the world of science. I think it's great you are seeking to avoid newly diagnosed celiacs becoming confused or misinformed. I guess I had the wrong idea about how this forum works. I'm still recovering today so perhaps I'm just not in the right place to be engaging with this - too grumpy.

[notme]

orange juice would tear up my stomach.  is there cream in the broccoli soup?  i don't do well with lactose sometimes *still* and i've been gluten-free for 6 years.  oven issues:  use the top rack if baking uncovered or make sure your gluten-free stuff is covered if using middle or bottom racks.   i would be cautious to self diagnose unless i was able to rule out some Very Scary Stuff, medically.  if it's not celiac or gluten related, you wouldn't want to let whatever is making you sick to continue to do so until it is debilitating or too far along to be treated.  good luck.

[Gemini]

No, I did not state anything about exact conditions and lesser exposure.  The study focused on animal feed, which did contain gluten, and how some people had reactions from exposure in confined spaces while feeding animals.
Comparing that study to exposure from a wheat field is apples and oranges. I have yet to find any reputable literature on whether living near wheat fields at harvest time is a danger to someone with Celiac Disease.  It would be helpful if there was some information on this.

You did get support on this forum and we tried to tell you that you really need to see a medical doctor if you are that sick.  That really is your only option right now. This coming from someone who hates doctors but even I know when I need to see one. You have a baby to take care of so need to be well. If you feel that you do have a gluten problem and do not want to be tested for it, then you might want to try the Fasano diet of only whole foods. You cannot go wrong with eating that healthy but you have to be strict about it.....no cheating.  It is a pain in the butt to have to always cook your own food but that is something you have to get used to if you want to eat strictly gluten free. I do not eat out that much and cook EVERYTHING pretty much from scratch and I work full time. It is a royal pain and time consuming but we have no other choice, do we?

Please do not stress about walking past a bakery or pub because you cannot be glutened from that.  What might be happening is....and this happens to me so I am not criticizing you in any way........psychosomatic reaction.  When I am in the room with food that is very gluteny and has strong smells, it makes me nauseous and I get a pounder of a headache. Regular pizza smell makes me absolutely gak. When I go out into the fresh air, symptoms go away within a few minutes.  I look at it as my body protecting me from food that will make me very sick if ingested. I am not embarrassed about it either because it's real.  That is what may be happening to you.

I hope you stay on the forum because there are very smart people on here who want to help. It is good to work with a nutritionist to help you develop a healthy diet but if you continue to be this sick, you really need to see a doctor to figure out if there is another underlying condition you are missing. If you do have Celiac, then there are other autoimmune diseases that occur with frequency with Celiac.  I know......I have 4 autoimmune diseases in total and 1 of them gives me more grief than the Celiac does. 

I hope you feel better soon...I really do! I understand what it feels like to be that sick.

[squirmingitch]

NightSky,

I am wondering if you might have a wheat allergy. I'm not saying you don't have a problem with gluten - please understand that. What I'm saying is that it's possible to have celiac AND a wheat allergy concurrently.

I am so sorry you're feeling so rotten awful! I agree that a GOOD doc is in order here and I know you've said you're going to pursue that course. I think you've been given some really helpful feedback and suggestions here. We all know how difficult it can be though to trace down the cause of some of our problems. It can be simply maddening!

Personally, I think the Fasano diet is a real starting point for you & a great idea. This will allow you to better pinpoint any foods that affect you when you begin adding them back into your diet. It's a way of working forward rather than trying to backtrack. Backtracking will make you crazy.

[NightSky]

17 hours ago, Gemini said:

The situations you listed for being glutened should not cause any reaction, no matter how sensitive you think you may be. 

Hi,

Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here.

I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones.

I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways.

Best wishes to you all, even those I didn't agree with!

Rhian 

[Jmg]

27 minutes ago, NightSky said:

I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones.

That was my story Rhian and that of many others here no doubt. I spent years on each and every anti-depressant under the sun whilst telling doctors that I thought something was physically wrong. I found out for myself in the end, so don't be afraid to back your own judgment, ultimately you are the world's leading expert on yourself  

But, whilst the diet change made a massive difference to my mood, it doesn't preclude me from suffering from depression. I think in some ways all those years have made it a part of me. 

I chose to go back on gluten for testing and it wasn't particularly pleasant. At the end of it I had a negative biopsy, although such was my reaction that the GI told me to avoid gluten for life. So I'm NCGS, or coeliac if I'm in a restaurant and want to eat safely. 

To me you're like I was, with two choices. Given what your body is telling you, just assume coeliac/NCGS and work even harder on nailing any contamination. See the tips above etc. Maybe try elimination diets with your Dietician's help to see if there's any other diet based intolerance - it does go with Coeliac - I have a problem with dairy for instance, with others its fodmaps. Finally look into Open Original Shared Link- bone broths, probiotics etc. If your super sensitive it could be that you have leaky gut and you could help to repair that with some diet choices which may make you less sensitive. 

Or you can go to the GP and try and nail down a bona fide diagnosis. That would mean a gluten challenge and you'd need support for the 8-12 weeks of blood testing and possible endoscopy. This board would be a good place for that if you choose to go down that route. A good GP or GI consultant makes all the difference there and maybe you could quietly check via colleagues or the web to find someone you can build a good relationship with. 

I think either of them would be a rational approach and in both cases you'll be taking action to improve your situation, which in itself is a good thing. 

 

[cstark]

15 hours ago, NightSky said:

You say with considerable certainty that unless the airborne exposure mimics the exact conditions in the study about two farmers, that it's not an issue. This was one study that indicated how airborne wheat can cause a problem. Now I'm not suggesting that being in the same room as bread, or being near a wheat field on a windy day causes gluten reactions. However, to state as fact that a lesser degree of exposure "is not an issue", I think is not my idea of responsible. I am still ascertaining what level of gluten I can handle and thank you yes, I have no idea what is wrong with me, I only know that on a day when I only ate homemade broccoli soup with salt, no stock and a glass of orange juice, a combine harvester literally sprayed wheat across the road in a cloud which I drove through. Two hours and forty minutes later I suddenly looked six months pregnant, stomach symptoms and redness and blisters started forming on my face. All of these happen whenever I have eaten gluten. I can't say what caused it on that one occasion. I only know that for me, I will be careful in similar circumstances. 

I came on here because I was having a really hard time and I was seeking support, hope really. I appreciate the supportive messages that have been posted. I really didn't want to get into disagreements about whether my experiences have been verified in the world of science. I think it's great you are seeking to avoid newly diagnosed celiacs becoming confused or misinformed. I guess I had the wrong idea about how this forum works. I'm still recovering today so perhaps I'm just not in the right place to be engaging with this - too grumpy.

If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information.  What has been provided can be used as tools to help figure out what is going on.  Please don't go away disgruntled or too frustrated.  There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information.  I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away.  It was on survival mode.  Forgive me if I am wrong, but I believe this is where you are at right now.  You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out.  If this assumption is correct, I GET IT!  It is not fun, neither is it easy.

Don't give up.  Things will get better.  Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out.  The answer may not come right away, but be patient.  it could be everything coming at you at once that making your body go into hypersentive mode.  I don't know, because I am not in your situation. 

Until you go to the doctor, do what you know to do and God will take care of the rest.  There is something that has kept me sane through this past year: It will be okay because God is in control.  He knows what is happening to you and your future is going to be.  When you have a good day, enjoy those moments.  When you have a bad day, bring back to memory those good days and see if you can do something for another person.  I have found this year that if I focus on someone else through the bad times especially things don't seem as grim.

I will be praying for you.

[Scott Adams]

Hello NightSky,

I agree 100% with your take here, and would like to apologize for how some here made you feel. Just a reminder that this forum's name and by-line is:

• Super Sensitive Celiacs & Gluten Sensitive
• Non-scientific discussions for those who have been gluten free for at least 6-12 months and suspect they are reacting to lower levels of gluten than the vast majority of celiacs.

I do hope you stick around and post more.

 

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I came on here because I was having a really hard time and I was seeking support, hope really. I appreciate the supportive messages that have been posted. I really didn't want to get into disagreements about whether my experiences have been verified in the world of science. I think it's great you are seeking to avoid newly diagnosed celiacs becoming confused or misinformed. I guess I had the wrong idea about how this forum works. I'm still recovering today so perhaps I'm just not in the right place to be engaging with this - too grumpy.

 

[GFinDC]

Hi (Nightsky),

Welcome to the forum!  

I had some similar kind of experiences with getting sick from air odors years ago myself.  Once I was at a pizza place with a couple people and just drank a soda and got sick.  I figure there was airborne gluten that had landed on the stack of water glasses.

Another time I was at a church event and got sick from perfume a woman was wearing.  She had really strong perfume on and it made my stomach turn.  I had to go out of the room and lay down for a while.  I don't think that was gluten related, but just the strong smell was enough to make me sick.

Both of these events happened years ago when I was much sicker all the time.  Since then I've gotten better and live in a shared household with gluten eaters and it is no problem.  I just keep an eye on things and am careful.  I can walk through the bakery section of the local grocery and not have any problem.  I do go late in the day usually so all the baking is probably over for hours.  But I don't go in the pizza shops any time of day.

What I've found is that now that I am doing better most of the time healthwise, the minor amounts of gluteny smells are not a problem.  I don't know if that womans' overpowering perfume would still make me sick or not.  I think it is true that some people react to strong odors.  If you are already sick I think your body may react more strongly than a person who is well also.  You might be more sensitive temporarily.  Kind of the straw that broke the camel's back theory.

I believe you can get better though.  I did and though it took years to get to feeling pretty well, it's definitely worth making an effort.

 

 

[NightSky]

Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy.

It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better. 

It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too.

My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks!

I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!

 

 

 

 

[GFinDC]

That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium.

Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet.

But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop.

Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!

[cstark]

It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.