Non-Severe Reaction... Help!

[Heather Anne]

Hi Everyone. I'm wondering if it is possible to get no reaction or a mild reaction to minute amounts of gluten over a long period of time. I have a severe reaction usually, as explained below, but apparently something has been making me sick still.

This is my first time posting, so I'll try to explain the situation concisely! I'm female, 32 years old!

I was very sick last year, feeling so fatigued that I couldn't move. I'd been fatigued for the past 10 years, but it became extreme April 2010. I also started getting tingling in my feet and fingers. Oh, and terrible headaches. Worst symptom though - the excessive diarrhea, bloating, and tummy noises ALL OF THE TIME! First doctor said I was fine. Went back 3 times in 2 weeks. She told my husband it was all in my mind. She called a week later and told me my b12 was low (didn't know how low until I switched doctors and got records - it was 42!). She put me on b12 shots daily, then weekly, then monthly for 6 months. She also sent me to a gastroenterologist to test for Celiac disease (first time I'd heard of it). He did a COLONOSCOPY for the diagnosis and said I didn't have it! (Yes, I know that this is the wrong end now!)

I went gluten-free anyway, at the request of the neurologist that I'd seen for the neuropathy. He said that the prior "ultra rapid cycling bipolar" diagnosis I'd had in grad school was probably wrong too so he sent me to a psychiatrist to take me off of my lithium. I stayed on it until I'd been on the gluten-free diet for 5 months (started in September 2010). I became anal about anything I put into my mouth! And I started feeling great! More energy than I'd had in forever. I was removed from the lithium in January. I was completely gluten-free until February. I accidentally ingested gluten through cross-contamination! I had such a severe reaction to a minute amount - from my father cooking my food in the same pan (after it had been washed) - with GI troubles and brain fog and irritability! It was such a strong reaction that my husband recognized about 30 minutes after eating the offending food.

Since then, I would occasionally ingest gluten by accident - through cross-contamination ONLY, usually at a restaurant (although we would only go out once a month). The reaction was always the same - very severe!

But then things started going wrong. I got pregnant in March and we lost our first-born (still birth) at 23 weeks. I had no morning sickness until I was 10 weeks. Then I could keep nothing down and was diagnosed with hyperemesis. I had weekly growth u/s and weigh-ins. I had been 160 since right after graduate school and I dropped 25 pounds by the time I delivered in mid-August. I accidentally ingested gluten 2 times during the pregnancy, very small amounts. After the pregnancy everyone expected the hyperemesis to go away. But the nausea and vomiting never went away. It did get better. I continued to lose weight and have horrible constipation. We attributed it to a miscarriage 3 cycles (yes, I bounced back quickly and I have 21-day cycles) after losing my son.

Now my diarrhea is back, as bad as it was pre-diet. I was also having severe pain under my left ribcage. My GP said it was probably severe gastritis (I'm prone, obviously) but sent me to a different GE. However, I was going to have to wait 3 weeks. Well, 2 weeks ago I went to the ER. They found nothing. Wednesday last week I had to go back. I had gotten to the point that when I would swallow anything, even water, it would come back up within 2 minutes (usually more quickly! My GP sent me immediately to the ER. They did a CT scan to make sure that nothing was blocking the passageway and then set me up with a different GE for the following day. I went and they immediately scheduled an endoscopy for that afternoon. Here's the interesting part.

He said that I have Celiac disease (really?! I didn't know that!!! haha - why else would I have gone gluten-free?!)! But he did say that it looked like I had never been on a gluten-free diet. Now I'm concerned. Again, I'm anal about what goes into my body. Is it possible that I have been getting a small amount of gluten from something and not reacting until it became so bad that my body just started shutting back down? My GE seems to think that everything can be attributed to Celiac.

Please help! We are going to have to wait another 6 months at least before trying to get pregnant again because that's how long it took originally to get my health back and my vitamin/mineral levels up again! (And yes, I still take monthly b12 shots to keep it at a normal level.)

Thanks in advance for the help!

[heidi g.]

I had a miscarriage too :/ I think i have had a couple. I have one son already i had him before i got sick. My wishes and luck go out to you. I know you can still have celiac and eat right and you can still get flare ups. For no reason- you can have other food allergies too that can be making you sick. try eliminating certain food groups. i know dairy can causes celiac symptoms- They do for me. soy, corn, eggs, and sometimes nuts can do that to you too.

[Austin Guy]

Have you checked via an elimination diet for other food intolerances? Around a month after getting off gluten I found soy nailed me almost as badly as gluten. Later it was other grains and just now I am having mild, but noticeable reactions to dairy and eggs. Don't know what my small intestine looks like as a result of eating offending foods, but I know they cause problems. Why they appear out of nowhere I can't explain. But nore can I explain that as a teenager I became severely allergic to salmon overnight. Ate it for dinner one night and was fine. The next day it brought on an anaphylactic reaction. Crazy.

[Lori2]

My reactions are not severe like yours, but I was reacting to something. I kept a detailed food journal for months but could not pinpoint the problem food. I should say, I thought I was keeping a detailed journal. When I finally wrote down EVERYTHING that went into my mouth, I was able to pinpoint my once-a-week cup of coffee

[T.H.]

Is it possible that I have been getting a small amount of gluten from something and not reacting until it became so bad that my body just started shutting back down?

I'd say so, yeah. Not always, but that's how my celiac disease went in the first place. No noticeable reaction to food when I ate it, just everything slowly blowing up on me, body-wise.

Another possibility is that you could be an oat sensitive celiac. About 10% of us are - we react to all oats, even gluten free ones. It's called avenin sensitive enteropathy. The problem is that many gluten-free companies don't have the same cross-contamination preventing practices in place for gluten-free oats, or they actually use gluten-free oats, so we can react to our gluten free food that we think is safe. Lundberg rice and Bob's red mill products are two that oat sensitive celiacs have reported reacting to. There are others, but those two have such basic ingredients, most of us wouldn't even think about it, ya know?

My GI has found that many of his celiac patients have trouble with artificial dyes and preservatives and GMO's. When they get off of these, they seem to improve. He also has a lot of his celiacs (especially if they are not healing) who end up having allergies or sensitivities to other foods. He has seen celiacs who haven't healed after going gluten free, but started healing when they eliminated other problem foods.

There is also super-sensitivity to gluten, where one reacts to lower levels of gluten than is allowed in Gluten Free foods, but that's usually something people check out only if they've eliminated other possibilities, in my experience.

[mushroom]

Tlhat darned glutem is so insidious. It can wreak havoc in your body long after you would think its effects should have passed. I am so sorry for the loss of your child, and your continued problems.

I would suggest that you go back to a very basic diet of whole foods only, nothing processed except maybe some Tinkyada pasta. Eat meat, fish, veggies, fruits, rice, pasta, seeds. Avoid soy, dairy, corn for sure. Trial eggs and nuts. Be careful of legulmes and nightshades. This is my diet (although I do manage dairy very well now but a lot of celiacs don't). Go backto your doctor and get your nutrient levels checked to make sure your are not deficient (again) in B12, also D, A, E and K, potassium, magnesium, ferritin (iron) folate. Also have your thyroid function checked to cover all the basesl

Eliminate all the chances of cross contamination by cooking all your own food, not buy anything proessed "gluten free" -- I know, it's a pain, but worth it to pinpoint where things are creeping in. Once you have stailized on a diet that does not bother you, you can challenge the addition of one food per week (avoiding the eight major food allergens to start with and I would say 9 by adding corn to the list because so many celiacs have trouble with corntoo. If you read of a food that celiacs have problems with, don't try it at first.l Iee0 track of your food and your symptoms and try to imit your reactions down to specific foods. It' a lot of work, but wo worth it.

Once we have been gluten free a while and then get hit, our body responds much more violently than it did formerly, and takes a while to settle down. My hub ate leftover Halloween candy that I warned him had gluten.... well here it is almost the end of November and he is still suffering from sinus which is his major gluten symptom.

[Heather Anne]

Now that I'm feeling a bit better, I'll reply! Thanks so much for all of your help!

heidi g. - I am so sorry for your loss(es). It really is hard. I have done elimination diets before, but gluten was the one that made all of the difference. I eliminated diary at the same time as gluten and reintroduced it three months later (at the drs request) and I did fine with it. That was months ago. I may try soy next. I don't eat a lot of it though because I prepare most stuff fresh. I'm pretty sure it's cc from something - most likely Swanson's Chicken Broth. My doctor said that my villi biopsy showed that they'd healed well. I cook with chicken broth all of the time (in rice and other dishes), so that is my first change. I started using a different kind certified gluten free but it has no taste so I'm back to finding a better one! Thanks!

Austin Guy - I have, but I will again. It definitely is not dairy, but soy may be a problem. We shall see in time! Thanks.

Lori2 - I do keep a detailed food journal. I'm pretty sure that, from reading it and going over it with a dietician who's also a Celiac patient herself, it is my chicken broth. However, I am also eliminating McCormicks spices because she says her daughter has problems with some of them. I'll switch those to Spice Island. Hopefully I'll figure it out. I'll reintroduce at a later time and see if the Swanson's Chicken Broth gives a reaction that I can pinpoint. Otherwise, I'll just stay with a new stock/broth. Thanks.

T.H. - It definitely can't be oats. I avoid them like the plague! I started that when I went gluten free because I have firsthand knowledge of agricultural practices with crop rotation. Many oat fields are rotated with wheat and there is always volunteer wheat growing in those oat fields! I am just not willing to chance it! I may introduced certified gluten free oats eventually, but not yet! Thanks. And it probably is that I am super sensitive, according to my doctor. He said that I am doing everything in my power to avoid it because I do eat mostly fresh/home-cooked meals. He said to try organic/non-GMO foods, as well as getting rid of anything that I can find documentation of possible cc (mostly from places labeling gluten-free but not testing well).

Mushroom - First of all, I LOVE your name and picture! I studied fungi for years while I was getting my Masters! I had never thought of nightshades or legumes before to try to eliminate! I don'd eat nuts (I have a peanut allergy and most nuts are contaminated). Since I do have a peanut allergy, I may try legume elimination, since peanuts are legumes! I do already cook all of my own food and use very little processed or pre-packaged foodstuffs. I LOVE to cook, so this is great for me. However, I will be eliminating my chicken broth, as mentioned above, to see if that is the cause! We do go out once a month (down from once a week) to a place that is diligent about gluten-free food. But there is always the chance that I get cc'd there as well! Thanks!

Thank you all so much! Good luck to you!

[Lilypad517]

Could it be a medicine? I just had to change 2 of 3 daily medicines because they contain gluten. I feel better than when I was eating gluten regularly, but still not well. My doc suggested the medicines as a daily small dose of gluten.

Just a thought

[Heather Anne]

Thanks Lilypad! Actually, I go through lots of steps to make sure that the meds I take are gluten-free. But no, I'm not on anything except pre-natals that I've been taking for a long time now. They are confirmed gluten-free through the manufacturer. I also take some vitamins intramuscularly, which are also gluten-free even though I don't need them to be! I'm way overcautious when it comes to this!

[mushroom]

I also take some vitamins intramuscularly, which are also gluten-free even though I don't need them to be! I'm way overcautious when it comes to this!

Ummm, can I ask why they would not need to be???

[Heather Anne]

You may ask!

I was told by my doctor (my gp) that they did not need to be gluten-free if they were not being ingested! I was also told this by the pharmacist. However, I check everything because I get skin reactions to A LOT of stuff. So I figure if my skin is going to react, why not my muscles, etc. I am just very cautious. Apparently overly cautious, but I'm still getting glutened so I don't know how people say that I am to cautious! My antibody levels are still slightly elevated (more than normal, apparently) so it's coming from somewhere. Since I eat mostly unprocessed food (with the exception of broths, tortillas, etc), I don't know where it's coming from. My husband has even been gluten free at home. I've cleaned out everything, changed pans, utensils, etc. I even make my own bread in a new bread maker (I HATE baking, love cooking, HATE baking).

My regular physician thinks I'm nuts, but I don't care. There's something somewhere and I don't know where it's from! So I DO check everything. From your response, I'm assuming that you also feel that it would be necessary to check! I hope that I'm not the only one. I've just been sick so long, after feeling better for a good chunk of time, going back to being sick really sucks!

[mushroom]

This was taken from a "Gluten Free in San Diego" website:

"Intravenous drugs: "You don't have to worry about any intravenous drugs. They are all gluten free". Open Original Shared Link, Number 4, 2008, page 19. RMJ's note: Furthermore, since intravenous drugs by-pass the digestive system, they are okay for celiac patients."

One would expect IV drugs to be inherently gluten free, but all the same, I don't think a simple bypass of the digestive tract would make me feel comfortable either. We all know what inhaled flour can do (does it get to the digestive tract? - who knows) and others claim problems with skin contact alone. Is the digestive tract the only means of ingress to the bloodstream? Just thinking out loud here. Never seen this question asked or answered.

I am glad you permitted me to ask the question

[Ollie's Mom]

This was taken from a "Gluten Free in San Diego" website:

"Intravenous drugs: "You don't have to worry about any intravenous drugs. They are all gluten free". Open Original Shared Link, Number 4, 2008, page 19. RMJ's note: Furthermore, since intravenous drugs by-pass the digestive system, they are okay for celiac patients."

One would expect IV drugs to be inherently gluten free, but all the same, I don't think a simple bypass of the digestive tract would make me feel comfortable either. We all know what inhaled flour can do (does it get to the digestive tract? - who knows) and others claim problems with skin contact alone. Is the digestive tract the only means of ingress to the bloodstream? Just thinking out loud here. Never seen this question asked or answered.

I am glad you permitted me to ask the question

I'm not a doctor, but I don't see why it would matter if you ingest it or inject it - gluten would cause harm none-the-less. Right? If the impact from gluten was only felt in the GI tract (ie - like a surface contact issue) then I don't see why people would be prone to neuro symptoms (migraines, ataxia, etc.) or rashes (like DH) etc... Gluten gets into the bloodstream through the GI system - or you can inject it directly into your bloodstream. Either way, it ends up in your bloodstream. Unless I'm missing something??

I was in the hospital last year, and they gave me some IV penicilin. I started to feel like I had been glutened within 30 minutes or so (I hadn't eaten anything or been given any other medicine), had my typical glutened-migraine and was vomiting shortly after that. We asked if there could be gluten in it - the staff were no help at all. They went of to check, but came back and said that they didn't know and there was no way to find out.

So... I dunno. If someone had dissolved gluten in a syringe I can tell you I'd never let it get anywhere near me!!

[Di2011]

I don't trust anything that is gluten regardless of what form it takes. DH goes nuts.

A few weeks ago I put bandaids on two areas (one on each hand) that I'd scratched and the skin had split. Within 5-10 minutes my entire hands and wrists felt like a bottle of acid had been poured on them. I ripped those things off so fast and despite them already being in bad condition, I scrubbed and scrubbed. My hands are still covered in bumps and lumps since that incident. They were only mildly affected before and now they still drive me crazy! I don't think bandaids like me.

I am sitting here just trying to imagine what a needle in my arm containing gluten might do?

I truly believe you were right to stick with what you know/believe and not the GPs advice.

[Di2011]

I was in the hospital last year, and they gave me some IV penicilin. I started to feel like I had been glutened within 30 minutes or so (I hadn't eaten anything or been given any other medicine), had my typical glutened-migraine and was vomiting shortly after that. We asked if there could be gluten in it - the staff were no help at all. They went of to check, but came back and said that they didn't know and there was no way to find out.

They musn't have internet at that hospital, or a phone

[Heather Anne]

What's so funny about all of this is that when I was in the hospital for a few days back in August, the first midwife wanted me to take anxiety medications. When they checked with the pharmacy, all the meds they had for what she wanted contained gluten. They kept asking for things - pain meds, etc. All came back containing gluten. They finally decided to put in an IV and give me the meds (this was in the middle of the night). The pharmacist refused to give me any IV bags for what they wanted - all of the liquids contained gluten as a binder. The next day the OB said that 'liquids can't contain gluten'. I went off on him (I was tired and in pain), citing everything from malt vinegar to an oral suspension I took that glutened me (which is when I started researching medications). So, needless to say, my husband went to the Walgreens down the street and bought me Tylenol and Benadryl (the midwife okay'd this!) and that's what I took for 41 hours of labor. (I didn't want an epidural... although that was deemed gluten-free!)

I already knew I was getting glutened from the stuff they were using internally to induce labor! I would get a headache within thirty minutes of them putting it in (they continued to put stuff in every 4 hours for 38 hours!)! This hospital is the largest in a big metropolitan area, contains an amazing children's hospital, and has a wonderful reputation. AND THEY HAVE NOTHING THAT DOESN'T CONTAIN GLUTEN?

As to band-aids - I can't use any adhesive on my skin. I break out in a rash, feel as if my limb is on fire, and get a headache! I say, do what's best for you in the situation. Not everything HAS to do with gluten, but if you react to it, it's best to stay away from it!!! Not to mention, everyone seems to react differently to gluten.

[Jestgar]

What's so funny about all of this is that when I was in the hospital for a few days back in August, the first midwife wanted me to take anxiety medications. When they checked with the pharmacy, all the meds they had for what she wanted contained gluten. They kept asking for things - pain meds, etc. All came back containing gluten. They finally decided to put in an IV and give me the meds (this was in the middle of the night). The pharmacist refused to give me any IV bags for what they wanted - all of the liquids contained gluten as a binder.

I've never heard of gluten in an IV.

here, for example, is Pfizer's list of drugs:

Open Original Shared Link

90% are labeled as gluten-free, and those that aren't still don't have gluten listed in the ingredients, not even the topicals.

[Heather Anne]

Jestgar - thanks for that! I was so frustrated at that point. It truly was ridiculous. I have filed a written complaint with the hospital's pharmacy (they said this was the only way to get things changed). This was my thought on the situation at that point in time: I was admitted around 3 and they didn't start trying to give me meds until after 5. My gut tells me that all this pharmacist was doing was looking at the information they have on file in the package insert and NOT calling the manufacturer. I still haven't heard from anyone regarding my complaint, although I filed it in the beginning of September. We have so much documentation, as we asked the midwife and OB for my records regarding the hospital medication requests and their response. We actually filed those with the complaint, mainly so we knew what to do if I ever ended up in that situation again.

[Jestgar]

Jestgar - thanks for that! I was so frustrated at that point. It truly was ridiculous. I have filed a written complaint with the hospital's pharmacy (they said this was the only way to get things changed). This was my thought on the situation at that point in time: I was admitted around 3 and they didn't start trying to give me meds until after 5. My gut tells me that all this pharmacist was doing was looking at the information they have on file in the package insert and NOT calling the manufacturer. I still haven't heard from anyone regarding my complaint, although I filed it in the beginning of September. We have so much documentation, as we asked the midwife and OB for my records regarding the hospital medication requests and their response. We actually filed those with the complaint, mainly so we knew what to do if I ever ended up in that situation again.

I think the package would have told him that it's gluten-free. My guess is that he was confusing glucose with gluten.

There is no way any IV product would contain a protein as big as gluten. I think putting something like that into your bloodstream would send you in to shock. Dumb pharmacist?