Why Did You Suspect You Were Super-Sensitive?

[T.H.]

Just a sort of 'getting-to-know-each-other' kind of question.

What made you start to suspect that you might be more sensitive to gluten than average? Was there a particular moment or food? Or was it more a build-up of experiences that led you to explore the idea?

And second, what did you think was causing your problems before you settled on super-sensitivity? How about your doctors? What did they think? What do they think now?

[jebby]

I noticed that I kept getting glutened from processed foods with no gluten-containing ingredients, like Tostitos tortilla chips and Reese's peanut butter cups, when I was about 6 months post-diagnosis. I would have the exact same symptoms as I did if I ate a bowel of regular pasta, immediate bloating and stabbing abdominal pains, followed by other digestive symptoms, then 3-7 days of joint pains, low grade fevers, brain fog, canker sores, dizziness, bruising, fatigue, etc. I began to call companies and found that ALL of the foods I was getting sick from were processed on shared lines with gluten-containing foods. Then I got extremely sick from making Christmas cookies with my kids last Christmas. Even though I kept washing my hands afterwards and thought I was being careful, just being around flour made me ill. I think this is what made me finally realize that I am super sensitive.

I am close friends with my primary care physician and his wife, so they have taken my diagnosis and reactions very seriously, I am very fortunate in this regard. But I am bummed out because my body has started to reject soy proteins over the last few weeks...I don't get digestive symptoms from soy, but am getting headaches and joint pains after every ingestion. I had been optimistic that I wasn't going to develop any other intolerances.

I would like to thank you, T.H., and all the other regulars on this board for all of your help and advice over the last 18 months since I was diagnosed. I truly do not know what I would do without this board!!

[dilettantesteph]

I kept reacting to things that others here didn't react to. People kept telling me that I had another illness or other sensitivities. Then I'd search through old posts and I'd find others who had the same issues. It was usually people with DH. They seem among the most sensitive. Or, maybe it was just one particular group that formed here at one time.

What really brought it home for me was a gluten free pizza. My son ate only one quarter of one of those tiny ones. I e-mailed the company and it had tested below 5 ppm.

A little after that one of the GI's in my GI group told me about super sensitivity and how he believes that some, or maybe all, those diagnosed with refractory sprue are actually super sensitive celiacs.

Around that same time a group of us here started comparing notes one products, and we made our household gluten free. That was when things started getting better.

All I've found so far as far as other sensitivities go is oats. If I look hard enough, or grow it myself, I have managed to tolerate everything else. I can't eat much of anything from the grocery store though.

This is very difficult.

[GlutenFreeManna]

I kept getting sick despite going 99% processed food free. I was eating vegetables, oragnic meat, fruit, olive oil, kosher salt, and spices and nothing else for a month. I traced back glutenings to spices I had used when still baking with flour, cooking utensils I had not gotten rid of from pre-gluten-free, driving my car after my husband had eaten gluteny fast food and drove, sharing a water bottle with my husband when he had been eatign fair food and many other things that just had no other explanation. I could not have figured these things out wihtout this board. I'm so happy to find this support group of others that have BTDT and could tell me I'm not crazy.

It's been a year and almost 10 months and I think I have actually become LESS sensitive over my time being strictly gluten-free. My reason for thinking this are that I can now eat a few gluten-free products and gluten-free flours without getting sick. However, I still consider myself very sensitive because I have only two or three restaurants I can eat out in safely. I know I must not be in the MOST sensitive category here because some of you are not able to eat out anywhere or eat any processed gluten-free foods.

[weluvgators]

Our second child was born a high needs, fussy child. Her first bite of gluten at 8 months was disconcerting, and she only had one bite - it was an obvious reaction of immediate breakout in an intense itch (that became angry) and fuss. We trialed other forms of gluten only a few times, as the results were terrible. By one year of age she had developed some horrendous teeth staining. After a cross country trip when we weren't able to control our diet as well as we did at home, it became more and more obvious. My husband was very encouraging and supportive that our DD needed to be gluten free - and that included ME being gluten free for her as she was still nursing (and, uh, that was her only gluten exposure!!). Our super duper silly girl would also get ammonia smells to her urine that were awful (as in you could smell it from across the room!) That also became more obvious in our travels.

Because her older sister was only 19 months older, I found it impossible to maintain a shared household - I was dealing with a 14 mo and a 33 mo when we went strictly gluten free (we had been going more and more gluten free prior to that step). So, three out of four members went strictly gluten free, and we maintained a gluten free home.

As our DD2 approached three years of age, she was still struggling, and none of her 2 year molars formed properly. We sent in for Enterolab testing on her to discover that she had VERY HIGH antibody loads to gluten (having been exposed directly to gluten only less than a hand full of times in her entire life!). So, we investigated the cross contamination issues. We got super strict - no eating out, no processed foods, etc. I kept searching for others that were having gluten reactions to "gluten free" foods, but it was really hard to find them!! It was the story of our life with our super duper silly girl, and it was why we tried to eliminate processed foods. After 9 months of being super duper strict for my super duper silly girl, I traveled to see my parents. And I ventured out to eat . . . and that didn't go so well! I found myself running to the bathroom, even though I was ordering "gluten free" foods . . . sigh. Suddenly after 2 1/2 years on the diet, it slowly dawned on me . . . um, maybe this gluten isssue is mine too. I had always thought my DH was to blame for such a super duper silly girl - he LOOKS the part! ha, ha, ha . . I guess. Suddenly, I found myself responding to people here in complete understanding on the super sensitive thread - FINALLY - people that understood what the what I was talking about - GLUTEN reactions to "gluten free" food!

So, we ended up buying home tests for gluten and testing our food staples. Shock and disbelief are understatements of our findings. It was so discouraging and frustrating. I took our test results in to our pedi gi, and she shook her head in understanding - I WAS SO ANGRY! I am still a bit angry - why can't we find help, why is it insanely hard to find TRULY GLUTEN FREE FOOD (not that I even think it truly exists at this point . . . ). Why aren't food manufacturers DISCUSSING the difficulties of producing gluten free food. It isn't like it is magically easier for a household with far fewer resources to produce the magical gluten free food themselves - they face the same struggles, hurdles and issues that the manufacturers have discovered, yet we are left to fend for ourselves in a mind numbing exercise of futility (at least that is how it feels sometimes). I have wondered at times if I am suppose to throw in the towel on everything my DH and I have worked for to date, as it is NOT very conducive to accommodating a truly gluten free diet (we move cross-country/world frequently and travel cross-country/world as well - not the easiest thing to do, although we are getting it down, I hope/pray).

Anyway, on to discovering our super sensitivity . . . so at three months of age, our dear third child was able to identify one of our cross contamination sources. Exposure through my breast milk was his exposure to this cross contamination source, and it was enough to produce symptoms for him that we could eliminate with elimination of the offending contamination. It was shocking. Then when he was transitioning to a milk alternative around 18 months of age . . . he became highly symptomatic . . . which wasn't surprising when I got my home tests and the hemp milk tested POSITIVE - I did a bunch of tests because I couldn't believe it - tempt you to drink it, eh??

I have also tested a "gluten free" food . . . don't do this right before dinner with an ingredient that you intend to use . . . it tested positive, but it was only a single ingredient in a really big mixture - my "diluting" it with the other whole food ingredients, the PPM would be further reduced . . . the gluten symptoms that I got from that experiment were also enlightening. And it gave me a better perspective on just how sensitive *I* was. In follow up on that batch with the manufacturer, they were able to test both finished product and ingredients to <10 PPM. And it was further reduced by dilution with my other whole food ingredients.

Do I need to add my disclaimer here that we have gluten "allergy" in addition to our celiac? And does anybody else here have both?

And, super duper silly girl has no other indications of other allergies or intolerances beyond gluten, although she maintains a gluten, dairy, soy free diet now - we have not been in a position to test dairy and soy for her. And it is the same thing for our littlest . . . although I am absolutely dumbfounded by just how sensitive he seems to be to CC issues - the poor kid has NEVER ingested gluten directly, but has extreme reactions to CC - it seems so unfair! And I was gluten free during his pregnancy too!

And, by going gluten free, my oldest child and myself seem to have lost every last bit of "tolerance" that we had previously developed for gluten exposure. I continue to seek ways to improve our tolerance and resilience to inevitable gluten exposures (environmental and CC in our foods).

Oh, and our doctors, both past and present, simply think that we are extraordinary! or is it unusual . . . or well, they don't know how to help us. But they are wonderfully supportive in doing what they can for us! I have made good progress working with an ND - best progress to date over the years - and that has been a tremendous boost for us. They all agree that we are super sensitive, avoidance is the best protocol (although they recognize the challenges of that . . . all of them have asked if we have consdered home schooling). The medical reports from our DDs hospitalizations last year simply document that we are oddly sensitive . . . and they don't know what to make of it.

[GlutenFreeManna]

Do I need to add my disclaimer here that we have gluten "allergy" in addition to our celiac? And does anybody else here have both?

I am fairly certain I have both. I have no formal testing to "prove" my gluten intolerance but I react to barley malt and have a wheat allergy as well (confirmed by IgE blood tests). I have a theory that those with allergies are more likely to be super sensitive.

[T.H.]

Oops - just realized I never answered the question myself.

The 2nd day of my gluten-free diet was the first day I tried a processed gluten-free food, and the first time I got sick off of one. First stupid thing I tried: gluten-free chips from Trader Joe's.

My first thought was that maybe I'd reacted to gluten, because I was in that 'OMG, everything has gluten, how do I know what's safe!' mode, you know? The food had been 'no gluten ingredients,' as I recall, but not gluten free. When I started reacting to all my gluten-free processed foods I was trying those first few days, I thought I was sick with the flu. Then I kept a food journal and I thought it was allergies (which, to be honest, a lot of it was in the beginning.). I still thought I was sensitive to gluten, big-time, but my main focus was looking for allergies and intolerances, and the docs were all doing the same thing.

It's really weird to remember how little I actually ATE for a while there: sweet potato, bison, quinoa, carrots, avocado, sea salt...and that was about it. Bell peppers came and went, and so did amaranth grain and blueberries and pretty much everything else I tried. I can make a quinoa-carrot-buffalo-sweet potato stir fry with my eyes closed, now! Still taste it, if I think about it...that's really not a pleasant memory, actually. I would definitely not recommend that combination except for those who are desperate and don't want to cook it all separately. Bleh.

I think my salt was the real breakthrough for me. With my plain food diet, if I ate them and nothing else, and didn't go into grocery stores or coffee shops much, I did okay, usually. Not perfect, but okay. I just couldn't make any progress to improving PAST that point, and I was getting more and more vitamin deficicient.

And then all of a sudden, between one day and the next, I went from 'okay' to 'sick after every single meal.' I felt awful, I was getting worse and worse, and I had NO idea what the heck was wrong! Just wanted to break down and cry, you know?

Reading a comment from another super-sensitive, who speculated about their salt, stunned me. They'd said they thought they might have had a reaction, with a trusted brand of salt that they'd just bought a new bag of, one that had completely revamped packaging now. They'd taken it out of the diet, put it back in, and the reaction was tracking with the salt. A few others had replied they suspected they were having the same issue. I literally read the comment, walked into my kitchen and opened the cupboard, and there was the exact same brand of salt, a new bag with the new packaging, that I'd just started using when I got sick.

I dropped the salt, and suddenly I was back to 'okay' again. Tried it a few more times, with other sizes and types by the same company, and I got sick each time. I've even had it happen a few times accidentally now, because I'd filled some little bento box salt shakers with the 'bad' salt, and didn't remember until after I'd used it and felt terrible again.

So the salt thing - that's what really got me looking at all the crazy, sensitive stuff, like mulch that my veggies were resting on adding cc, that sort of thing. Being super, super careful, my improvement has been significant enough that my docs are all on board with the idea, which I find nothing short of amazing, honestly.

It's odd, but in many ways, I'm rather grateful my reaction to gluten is so nasty. If it wasn't, I suspect I would have gone on for years, mildly reacting and never completely healing but not motivated enough to do a huge dietary change to see if it helped, or even research into something like that. When it was so awful, that was motivation enough to dive in and make it stop.

[GlutenDude]

- When my doctor told me my numbers were the highest he's ever seen.

- When he said my intestines were totally flatlined.

- When it took me two years of going gluten free to start feeling decent again.

- When, five years later, I still have many more bad days than good days.

- When almost ALL foods give me a stomach ache.

[Nannu]

Hi,

Just thought that my daughter's case is may be like one of you here. She was diagnosed at very high TTG levels of 297 and after 7 months of going GFD her levels were at 291. I haven't come across any case like this in this forum. But, the way you have written means that even so called gluten-free processed foods are acting negatively for you...may be is the case with my daughter as well, though there are no definitive symptoms now and she is doing very well on GFD but, TTG levels seem to be a complete contradiction.

Could you all share your TTG levels at various stages of healing after going GFD, please....?

Thanks

Nannu

[dilettantesteph]

My levels were negative after one year. Despite that, I was still experiencing symptoms which went away when I removed more gluten from my diet. Positive numbers indicate that you are still reacting to gluten, but negative numbers don't necessarily indicate that you aren't reacting to gluten. There are plenty of cases where, upon diagnosis, celiacs have negative antibody serum levels, but still a positive biopsy.

This is a recent Dr. Green (from Columbia University) talk where he talks about that and celiac disease in general.

[Kansas]

I am beginning to think I am super sensitive. I am self-diagnosed, tested negative on the gene testing. Anytime I think I might try a new food labeled gluten free, it usually is ok maybe the first time, but by the third time, I am sick. I was silly enough to try a ham labeled gluten free, looked at their website, looked ok, so I had a slice last Monday. Everything seemed fine, so three days later, I tried another slice, Sunday I used some for an omlette, and Sunday afternoon, I started those old familiar feelings. After three years, I think I have learned that unless it is certified gluten free, stay away from it!

[GlutenFreeManna]

I am beginning to think I am super sensitive. I am self-diagnosed, tested negative on the gene testing. Anytime I think I might try a new food labeled gluten free, it usually is ok maybe the first time, but by the third time, I am sick. I was silly enough to try a ham labeled gluten free, looked at their website, looked ok, so I had a slice last Monday. Everything seemed fine, so three days later, I tried another slice, Sunday I used some for an omlette, and Sunday afternoon, I started those old familiar feelings. After three years, I think I have learned that unless it is certified gluten free, stay away from it!

Are you saying you ate ham that had been open and in your fridge for about a week? I think the greater possibility is that the ham was starting to go bad a week later and you got some mild food poisoning. Lunch meat is usually only good for 3-4 days after you open it, unless you put it in the freezer. It MIGHT be safe in the fridge for a week but, personally I would not risk it. You might also want to check your fridge temp with a themometer to make sure food is not spoiling on you.

[Kansas]

No,the ham was ok. I have had the same experience with Snickers, UTZ Potato Stix, and Baby Ruth.

[T.H.]

Sorry that I can't share my numbers - my test results are buried in the files right now and I'm having poor luck getting my hands on them.

I do recall that while my numbers were definitely above the normal range, they weren't extremely high. Based on symptoms, I've had celiac disease over 20 years, but my daughter (11 at the time) had higher blood test results than mine were. I also don't tend to get gut symptoms. Mine are mostly neurological or affecting other body parts (frequent illness, frequent soft tissue injuries and conditions, insomnia, anxiety or anger management issues, vertigo, difficulty thinking/concentrating).

When I was tested around 5 months after being diagnosed, my blood test was still positive. I believe it dropped a little, but not by much. My vitamin levels were falling, and my thyroid levels were climbing (in a bad way) at 1 year gluten free.

At 2 years gluten free, my endoscopy and blood tests are normal, my vitamin levels have stabilized, and my thyroid levels have dropped back to normal. I went super gluten-free around 1 year after going gluten-free.

My own GI doc has a large number of the celiac cases in our city, and he mentioned to me that many times, his celiacs patients who are not healing have the following issues:

1. Undiagnosed allergies/intolerances - they can cause inflammation in the gut that can impede healing.

2. More of his celiac patients have problems with artificial dyes, preservatives, pesticides, and such. This also seemed to impeded healing in those patients who had this issue, so he recommends that his celiac patients eat organic.

3. I understand that he is now trying out lower-than-20-ppm diets with his patients who are not healing, based on examples like my own, where I finally healed on this type of diet. So it sounds like he believes some celiacs are not healing due to being more sensitive than average, as well.

A couple questions?

1. Does your daughter eat gluten-free oats? There are a low percentage of celiacs who are oat sensitive (you don't have to have celiac disease to have this). It's called avenin sensitive enteropathy, ASE for short. If your daughter happens to be in this category, a number of gluten-free foods that may have gluten-free oats or gluten-free oat cc can cause her problems. I believe this can impede healing, as well. However, most people I know who have this still have symptoms, so the odds may be low that this is an issue for her.

2. Has your doctor checked your daughter for any other issues that cause high TTG? I don't know as much about this issue, but I have read from posts on this site that there are a few conditions that will also give a high TTG. Although honestly, if your daughter is celiac positive with high TTG, odds are probably better that gluten is involved.

3. Have you ever looked at a list of non-gut symptoms for celiac disease? I only found it after I was almost healed, but was very surprised how many things were symptoms that I completely missed. There's a good list here:

Open Original Shared Link

It has one of the more complete lists of non-gut symptoms that I've found.

[Nannu]

My levels were negative after one year. Despite that, I was still experiencing symptoms which went away when I removed more gluten from my diet. Positive numbers indicate that you are still reacting to gluten, but negative numbers don't necessarily indicate that you aren't reacting to gluten. There are plenty of cases where, upon diagnosis, celiacs have negative antibody serum levels, but still a positive biopsy.

This is a recent Dr. Green (from Columbia University) talk where he talks about that and celiac disease in general.

Thanks for the reply. Did you test your TTG levels first time after a year only? If not, what were your intermediate levels? Will definitely checkout the videos that you have shared.

Thanks again

Nannu

[BornToRock]

Just a sort of 'getting-to-know-each-other' kind of question.

What made you start to suspect that you might be more sensitive to gluten than average? Was there a particular moment or food? Or was it more a build-up of experiences that led you to explore the idea?

And second, what did you think was causing your problems before you settled on super-sensitivity? How about your doctors? What did they think? What do they think now?

Hello T.H.,

Firstly thankyou for the oppurtunity to talk.

I didnt know for quite a while. I used to have issues eating anything - when I was working I used to use my whole lunch break to go to the bathroom. I would get rashes all over my body and my weight went up dramatically. My toenails had started to fall off and in 2008 I was admitted in hospital (before the dramatic weight gain) with Cirrosis of the liver, severe anaemia and bruising. I also had an enlarged spleen. I was malnourished and yellow. I have had to have iron infusions, blood transfusions, platelet infusions, to keep me going.

In 2009 I was tested for celiacs, it came back positive but the doctor said it couldnt be celiacs because celiacs doesnt explain such dramatic liver damage and portal hypertension.

In 2010, I threw up blood (I was 24 at the time and wasnt a drinker, normally an indicator of cirrhosis) and was admitted into hospital. I always felt better eating nothing, I didnt know why. I thrived without food in my stomach whereas other people would feel awful.

It was my mother, who suggested a gluten free diet and a request for another blood test which came back highly positive for Celiacs)

As for what I thought was causing my problems before I got sick, I thought it might be an eating disorder I had throughout my teens backfiring and causing weight gain due to starvation mode. I also thought the cirrotic liver had caused the weight gain and general feeling of unwellness due to poor metabolism.

My doctors believe I am gluten intolerant but they do not believe celiacs could explain the splenogemaly (enlarged spleen) and portal hypertension I have.

I have been gluten free for almost a year and I absolutely adore it. My liver has regnerated after being small (there is still cirhosis but before I went gluten free it was shrinking) I go to the bathroom normally and my weight is stable. Before I went gluten free my teeth were rotting and now I am on the diet they are white again. My toenails are no longer falling off and my hair isnt falling out either like it was.

(additional note as previously mentioned, I am a 25 year old male who has probably drunk ten beers in my whole life maximum, never done drugs and was 21 when I first got cirrhosis, so it is in no way a drinking issue)

It is the best diet, I believe it saved my life.

[Nannu]

Sorry that I can't share my numbers - my test results are buried in the files right now and I'm having poor luck getting my hands on them.

I do recall that while my numbers were definitely above the normal range, they weren't extremely high. Based on symptoms, I've had celiac disease over 20 years, but my daughter (11 at the time) had higher blood test results than mine were. I also don't tend to get gut symptoms. Mine are mostly neurological or affecting other body parts (frequent illness, frequent soft tissue injuries and conditions, insomnia, anxiety or anger management issues, vertigo, difficulty thinking/concentrating).

When I was tested around 5 months after being diagnosed, my blood test was still positive. I believe it dropped a little, but not by much. My vitamin levels were falling, and my thyroid levels were climbing (in a bad way) at 1 year gluten free.

At 2 years gluten free, my endoscopy and blood tests are normal, my vitamin levels have stabilized, and my thyroid levels have dropped back to normal. I went super gluten-free around 1 year after going gluten-free.

My own GI doc has a large number of the celiac cases in our city, and he mentioned to me that many times, his celiacs patients who are not healing have the following issues:

1. Undiagnosed allergies/intolerances - they can cause inflammation in the gut that can impede healing.

2. More of his celiac patients have problems with artificial dyes, preservatives, pesticides, and such. This also seemed to impeded healing in those patients who had this issue, so he recommends that his celiac patients eat organic.

3. I understand that he is now trying out lower-than-20-ppm diets with his patients who are not healing, based on examples like my own, where I finally healed on this type of diet. So it sounds like he believes some celiacs are not healing due to being more sensitive than average, as well.

A couple questions?

1. Does your daughter eat gluten-free oats? There are a low percentage of celiacs who are oat sensitive (you don't have to have celiac disease to have this). It's called avenin sensitive enteropathy, ASE for short. If your daughter happens to be in this category, a number of gluten-free foods that may have gluten-free oats or gluten-free oat cc can cause her problems. I believe this can impede healing, as well. However, most people I know who have this still have symptoms, so the odds may be low that this is an issue for her.

2. Has your doctor checked your daughter for any other issues that cause high TTG? I don't know as much about this issue, but I have read from posts on this site that there are a few conditions that will also give a high TTG. Although honestly, if your daughter is celiac positive with high TTG, odds are probably better that gluten is involved.

3. Have you ever looked at a list of non-gut symptoms for celiac disease? I only found it after I was almost healed, but was very surprised how many things were symptoms that I completely missed. There's a good list here:

Open Original Shared Link

It has one of the more complete lists of non-gut symptoms that I've found.

Hi T.H,

Apologies for such a delayed reply and thanks a ton for so much information. Let me answer your questions before i write what all improved measures i have taken at home. My daughter doesn't consume oats. She is mostly ok with most of the foods though there is a bout of D (once only but loose) when i mess up to give her multiple foods that are categorized heavy as liver, milk, spinach, 2-3 fruits, eggs, chick peas etc all on the single day. I try to be careful planning her menu, but mostly she is doing well. I'll just post below few of the measures that we have taken in the family so that possible gluten intake can be avoided:

1. I have bought all the solid spices and grinding them at home myself, so that gives me peace of mind.

2. For my daughter, i am grinding millets, beans, gram flour etc at home only so that she consumes minimum processed foods.

3. One discovery, i found wheat grains in my pack of rice which i bought recently. It gave me shock of life. They were 12 grains in 5 kgs of rice, but they were there. But, learning, always looks for wheat grains in all the whole foods....

4. Minimised her consumption of processed foods.

5. Stopped all the indian gluten free that she was consuming. It will be a long way before celiac catches up here and improvement in quality standards is a key.

I am hopeful that i am going to get good results after 3 months. This forum is amazing...and the people here are wonderful to give help, suggestions anytime we are in delimma.

Thanks once again. Will keep posting.