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Gluten Intolerance Or Celiac But Neg Bloodwork Last Year

gluten intolerance celiac undiagnosed sun sensitive light sensitive rash

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#1 learning2cope

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Posted 24 February 2014 - 12:37 PM

Hi, everyone. My blood work was negative for Celiac last year, and I also had a biopsy done on my hand (palms) where I have an undiagnosed pustular psoriasis-like rash (and on the soles of my feet) and that was inconclusive for psoriasis AND DH. So I am still no further to finding out these health problems I have.

 

I had an upper endoscopy but I don't think they took biopsies of my stomach or my duodenum. If they did, I never received a call with any results. 

 

Anyway, I'm going through a phase again of diarrhea (fluffy, weird cloud-like stools) of yellowish or light brown color most of the time, bloating, nausea and the newest issue is heart burn that is not relieved by Pepcid or Prevacid which is WEIRD for me. I have an old-ish prescription of Phenergan (from last year due to the severe nausea I had) and it's working well for my heartburn and bloating pain.

 

I am starting to journal my food intake and I am noticing that whenever I eat something with obvious gluten I end up with this heart burn and bloating. My stomach was happy and fine when I woke up, I was up for about an hour then had breakfast. Mom made biscuits and eggs and I had an egg sandwich with one biscuit as the bread, and had a slice of American cheese on it.

 

Within a half hour I noticed the bloating and burning way down low in my intestines, then less than 5 minutes after that I felt the heart burn appear. So I took a Phenergan. I'm feeling much better though right now it's not fully kicked in, so I still have a little bloating pain but it seems the heart burn is gone.

 

Now here is some background:

Feb 5, 2014 I quit drinking diet soda altogether. I had 3 that day by noon and around 1pm I refused to drink any more soda. I have only had water, orange juice, soy milk and 2 regular Cokes since then. I am drinking water all day with the occasional OJ for breakfast (4-8oz).

 

About a week or so ago I noticed my PMLE (sun allergy) was horrible. It is now affecting my face first and foremost, my EYES, my arms which is typical for me but even indoors Incandescent bulbs are causing the rash on my face, and arms. That is not normal at all for me. I've been waking up with a rash all over my face, it's not super red or anything but it tends to itch. I am not noticing any swelling in my throat or anything like that.

 

I do have rosacea and it's flared up big time on my left cheek, on the apple. Huge red blotch. So I put sunscreen (SPF 50) on my face today not long after I woke up.

 

I have to wear my over-my-glasses sunglasses all day and until I go to sleep due to the brightness of the sun in our house, lightbulbs, TV, laptop screen cause me to have a migraine and my eyes sting and burn. I'm also having eye allergies so I've been using Zaditor which doenst work for the light sensitivity (which also causes stinging and burning) and I switched to Visine A.C. and it works better for now for the regular seasonal eye allergies. But the stinging/burning from light started prior to the eye allergies.

 

So that is where I am at right now. I have to wear sunscreen whenever I go outside or am near a window. And even then the sunscreen doesn't seem to protect my face at all from developing the rash and the rosacea. The sunscreen is finally protecting my arms like it should but for some unknown reason it is not helping my face. So basically I am a hermit in my own home now.

 

I am thinking I might go ahead and do the colonoscopy. But when I had the upper GI scope they didn't sedate me enough and wow it was a horrible experience to say the least. So I will tell the colonoscopy doctor and nurse that I was not sedated enough for the endoscopy I had in August (which was in Ohio, we moved to Nevada since then) so I hope they can seriously sedate me this time.

 

I am lactose intolerant but do not have any issues with sliced cheese or sour cream that I have noticed. I can't eat cottage cheese, frozen yogurt, yogurt, milk, etc. Though I seem to be able to handle milk or cream in amounts I use for coffee every morning without having any issues.

 

I have no known food allergies other than Kiwi and fresh pineapple. That causes burning on my lips and tongue but no systemic reactions as of last time I had those foods.

 

If you can give any advice or anything please feel free to reply. I have a dermatologist appointment tomorrow to address the skin rash. I'm seriously thinking of going gluten-free but I live with my parents and they do not have gluten intolerances. Our kitchen would be full of gluten and skillets, pans, oven, toaster, pantry, etc would all be contaminated all the time.

 

Thank you.


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#2 learning2cope

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Posted 24 February 2014 - 07:05 PM

I'm a celiac patient (found out in 2004), but it took years of testing and false negative results before I was properly diagnosed.  I was finally diagnosed when my GI doctor did a biopsy of my small instestine.  My mom also has celiac and she suffers from vitiligo and other skin issues as a result. In fact, we do not have any of the same reactions/symptoms, which was another reason my doctors didn't believe I had celiac.  I have friends who suffered neurological issues and other medical problems that no one would have thought to link to celiac, and finally after ruling out almost everything else - sure enough, they learned they had celiac.  My GI doctor told me that most people with celiac are also lactose intollerant to a certain degree.  I too can eat some cheeses and milk products in moderation without any issue. 

 

My cousin's wife thought she had celiac, did the blood test (negative) and then the biopsy (negative too), it wasn't until she eliminated certain foods from her diet (wheat, sugar, dairy, soy) one by one, that she learned she was allergic to soy.   Soy, like gluten, is found in more food products than you'd think... You should seriously consider doing another biopsy to check for celiac and if that comes back negative you will know 100% that it's not the issue.  Then you should talk to your doc about doing an elimination diet and see if you can figure it out that way.

 

Hope this helps... best of luck!

Thank you. I will likely go gluten-free very, very soon to see if it fixes anything about my recent health problems (or even life-long health problems!) I just don't know what to do since my parents are not likely gluten-sensitive and mom is the one who cooks for us all (even though I am 29 years old, disabled, and living at home.) 

 

Mom is very adament that our kitchen will not become gluten-free. Sooo I'm kinda at a loss as how to proceed. I don't want to be glutened once I become gluten-free. I have no idea what to do in that regard. If I had my own kitchen, pantry, etc, I would make it gluten-free then prohibit gluten from being brought in. 

 

Do you have any advice or web links that may help me/us?


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#3 GF Lover

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Posted 25 February 2014 - 05:16 AM

Your eyes and face seem to be reacting like an allergy.  Some medication you started? A new Lotion? Something that has triggerd that.  I would consider the eye thing a separate issues for now and get treatments.  I may all coordinate in the end but I would see an opthomologist.

 

Colleen


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#4 NoGlutenCooties

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Posted 25 February 2014 - 05:23 AM

You should seriously consider doing another biopsy to check for celiac and if that comes back negative you will know 100% that it's not the issue. 

 

While I agree that a biopsy is a good next-step, a negative biopsy does not mean that gluten isn't a problem.  It doesn't even mean that you definitely don't have Celiac.  False-negative results for both the bloodwork and the biopsy are not all that uncommon - they can easily miss it.  And there's always the possibility of non-Celiac-gluten-intolerance in which case the biopsy will always come back negative because there is no villi damage.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#5 learning2cope

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Posted 26 February 2014 - 10:49 AM

Now I am having what appears to be an allergic reaction to my Victoza (injectible diabetes medicaion). My belly is all red and itchy all over the right side (where I injected yesterday) and around the injection site is one large red area. I'm not going to take it today. I am miserable right now with allergies. This morning I had to use my eye drops again due to severe stinging. 

 

The light sensitivity seems to be gone. But I see an eye doctor on Tuesday and an allergist on Wednesday of next week. I'm going to take benedryl here in a few minutes if I can find the bottle. I did take my daily pills (which includes Zyrtec) about a half hour or so ago.

 

I have no idea what to do other than quit eating gluten and see if it helps. I think I will start that today. I have no choice at this point. I have to do something drastic and SOON. 

 

My dermatologist finally chose a diagnosis for my rash on my hands and feet which he called dishydrotic eczema (aka Pompholyx) which is what I thought it was - or palmo plantar pustular psoriasis. But he finally saw the "bubbles" aka blisters and decided it was the eczema. *shrugs*

 

I may get a biopsy done but it all depends on how this allergist appointment goes in a week. I'm at the breaking point where I have to make a firm decision on how to proceed and I am choosing today to quit eating gluten if possible. Even if that only means eating eggs for breakfast, lunch, and dinner - so be it.

 

I'm sick of being itchy as heck! I don't really care about the blotchy, red rash on my face and arms but it's the itching and stinging that really bothers me the most. Especially today, my belly being so irritated. 

 

I have not changed any skincare products.

 

I use Dr Bronner's Tea Tree bar soap for bathing, coconut oil and jojoba oils for moisturizing, Cetaphil Gentle Skin Cleanser for my face wash, Wen cleansing conditioner and prescription ketoconazole shampoo for my hair/scalp due to seborrheic dermatitis. Naturally Fresh Deodorant Crystal Spray Mist unscented and hypoallergenic deodorant, and my typical prescription pills which have not changed. I don't wear makeup more than once or twice a year (and have not used it in about 6 months), no changes in foods I eat or brands, no change in laundry detergent (though I think I'm now allergic to it so we bought All Free & Clear), I don't wear perfumes or scented body lotions or anything like that. We haven't changed any cleaning supplies. Our dog does not have fleas. 

 

So today I have to go gluten-free as a first step to see if it seems to be causing all of this allergy stuff. :(


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#6 learning2cope

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Posted 26 February 2014 - 11:21 AM

Oh I did call my doctor for the endoscopy results and there were no biopsies taken (great...) they did find "grade 1 irritation" from gastric juices in my "lower esophageal junction". It sounded mild, so I don't think it's much of an issue. We already knew I had GERD. Have had it for about 4 years now.


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#7 NoGlutenCooties

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Posted 27 February 2014 - 07:01 AM

Wow... no biopsies.  I really hate doctors sometimes.  They're right up there with used-car salesmen and ambulance-chasing lawyers...

 

Anyhow... it's completely your choice if you decide to go gluten-free without waiting for a diagnosis.  With severe symptoms, I don't blame you one bit.  Just a word of caution... you have to go 100% gluten-free.  No cheating.  No cross-contamination.  And if it is indeed Celiac, don't be surprised if you feel a bit worse before you feel better.  Many people have reported that while some of their symptoms starting going away right away, other symptoms got worse at first.  Some people experience withdrawal.  For some folks their symptoms come and go for months after first going gluten-free.  But it DOES get better.  Just try not to get discouraged if it all doesn't go away and get better all at once right away.  It can take some time.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#8 learning2cope

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Posted 27 February 2014 - 10:13 AM

Wow... no biopsies.  I really hate doctors sometimes.  They're right up there with used-car salesmen and ambulance-chasing lawyers...

 

Anyhow... it's completely your choice if you decide to go gluten-free without waiting for a diagnosis.  With severe symptoms, I don't blame you one bit.  Just a word of caution... you have to go 100% gluten-free.  No cheating.  No cross-contamination.  And if it is indeed Celiac, don't be surprised if you feel a bit worse before you feel better.  Many people have reported that while some of their symptoms starting going away right away, other symptoms got worse at first.  Some people experience withdrawal.  For some folks their symptoms come and go for months after first going gluten-free.  But it DOES get better.  Just try not to get discouraged if it all doesn't go away and get better all at once right away.  It can take some time.

I feel the same way. Argh!

 

Yesterday I had no major issues. I did an experiment. I completely avoided gluten yesterday.

 

I am having a slight sensitivity to cheese (bloating and gas and slight heart burn) but it goes away pretty quickly on it's own. I did not have to take any tums or Phenergan yesterday. Yay!


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#9 NoGlutenCooties

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Posted 27 February 2014 - 10:42 AM

I feel the same way. Argh!

 

Yesterday I had no major issues. I did an experiment. I completely avoided gluten yesterday.

 

I am having a slight sensitivity to cheese (bloating and gas and slight heart burn) but it goes away pretty quickly on it's own. I did not have to take any tums or Phenergan yesterday. Yay!

 

It's not uncommon for Celiacs to have a hard time tolerating dairy at first.  You may want to avoid dairy - or stick to "mild" dairy like cottage cheese and yogurt and avoid the harder-to-digest stuff like aged, hard cheese and full-out whole milk.  Over time, many seem to find that even if they weren't able to tolerate dairy before, after being gluten-free for awhile they can begin to tolerate it again.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#10 learning2cope

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Posted 27 February 2014 - 12:26 PM

It's not uncommon for Celiacs to have a hard time tolerating dairy at first.  You may want to avoid dairy - or stick to "mild" dairy like cottage cheese and yogurt and avoid the harder-to-digest stuff like aged, hard cheese and full-out whole milk.  Over time, many seem to find that even if they weren't able to tolerate dairy before, after being gluten-free for awhile they can begin to tolerate it again.

Well actually I seem to be able to handle harder cheeses (mozzarella, cheddar, -jack cheeses) but can't handle cottage cheese, milk, cream in large amounts (more than used for coffee), frozen yogurt and regular yogurt. I seem to be able to handle sour cream in amounts used for soups/chili or burritos, etc which surprises me.

 

I did have a little more gas today from 2 string cheese as part of my breakfast but didn't have heart burn at all today from it, that's an improvement! Yay! 

 

I do hope that after my gut has healed (IF I indeed do have Celiac Disease) I will be able to tolerate more typical amounts of lactose such as for creamy soups, ice cream, etc. But right now I'm in no hurry. I want to heal. 

 

I talked to dad a little bit about the gluten-free free trial and he understands and thinks it's a great idea! He fully understands (to the extend that he CAN) about the mixed living situation (gluten-free + G) and will talk to mom about it. Hopefully he can calm her nerves some (which is probably why she's so adamantly against going full gluten-free in our kitchen.

 

So we'll see how it pans out. I told mom just a while ago how good I feel. She is very happy and was actually asking about which foods I can eat (like Sun Chips, Lay's potato chips, etc) and other things. So I think the more I can help her figure this out, the more she will be willing to go gluten-free in our home. Now of course I'm not forcing anybody to actually EAT gluten-free like if/when we go out to eat, or even if I'm not with them. Heck, eat up! LOL

 

But so far (just 1.5 days in) I feel great comparatively! I'm going to wait a while before I venture out into the sunshine without any sunscreen on though. My face is calmed down a lot and my arms are not actively angry red or itchy, stinging, etc.

 

I'm hungry right now but there really isn't anything to eat that isn't contaminated with gluten here. Well, we have canned and frozen veggies, frozen meats, eggs, soy milk, protein powder, vegetarian baked beans (which I ate last night as a snack), string cheese, possibly a canned soup, but I'd have to call Kroger customer service since it's their brand. There is a questionable ingredient but doesn't say made with wheat. Sooo I'm not sure about it. Plus I've read on these forums that many people have issues with Kroger brand foods even if it is inherintly gluten-free. We have Quaker Old Fashioned Oats but I'm not sure if they are even remotely gluten-free due to CC.

 

I may just have a soy milk protein smoothie.


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#11 learning2cope

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Posted 27 February 2014 - 02:16 PM

Ah darn. I was glutened. I made grits. I checked the grits ingredients. 

 

Quaker Quick 5-minutes Grits

WHITE HOMINY GRITS MADE FROM CORN, NIACIN*, REDUCED IRON, THIAMIN MONONITRATE*, RIBOFLAVIN*, FOLIC ACID*. *ONE OF THE B VITAMINS

 

I thought I'd be fine! Well it was either the grits, pyrex bowl, 2 measuring cups, spoon, plastic wrap, salt our our microwave which glutened me. 

 

First I had strong heart burn, then as that died down I began feeling lower intestine bloating/pain/diarrhea-type issues going on. That has calmed a bit but now my head feel floaty and have a slight headache. My eyes are starting to burn again and the light from our kitchen window is making my eyes squint and hurt. I did great yesterday and up until just after I finished the grits.

 

I used a pyrex mixing bowl, plastic cereal bowl (yeah probably was that since it's got lots of little scratches in it), metal spoon, 2 plastic measuring cups which typically are used for wheat flour and all that (not) good stuff, plastic wrap to cover the top of the bowl in the microwave to somehow prevent gluten in the microwave from getting into my food (does that even work), or the salt from the container since I felt it might be safer than the salt shaker.

 

Morton's website says their iodized table salt does not contain any gluten "in the form of wheat, barley, rye, oats or triticale"

 

Anyway, I'm having light stabbing pains in my intestines. I'm going to have to go to the bathroom. :(


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#12 1desperateladysaved

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Posted 28 February 2014 - 11:52 AM

Do you think you that with your parents permission you could create a little kitchen for you elsewhere in the home? It can be as simple as a table, electric skillet, utensils, and electric outlet.  A sink would be wonderful, but a large pot may also suffice for doing dishes.  I set this sort of thing up in a hotel room and it works for me.

 

Low blood sugar has given me light sensitive eyes in the past.  I know too that some prescription medicines can cause light sensitivity.

 

The final test for celiac would to go 100% gluten free and recording changes.  I do hope you will be more comfortable soon.

 

D


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#13 learning2cope

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Posted 28 February 2014 - 12:06 PM

Do you think you that with your parents permission you could create a little kitchen for you elsewhere in the home? It can be as simple as a table, electric skillet, utensils, and electric outlet.  A sink would be wonderful, but a large pot may also suffice for doing dishes.  I set this sort of thing up in a hotel room and it works for me.

 

Low blood sugar has given me light sensitive eyes in the past.  I know too that some prescription medicines can cause light sensitivity.

 

The final test for celiac would to go 100% gluten free and recording changes.  I do hope you will be more comfortable soon.

 

D

I don't think dad would have a problem with that, but mom certainly would.  I have a large table in my bedroom that would be perfect to have my own "kitchen" set-up. We have a couple of those deep large pans like for washing dishes in. I could probably use one of those, but it's plastic. Would glutenous dish water from a previous washing be hard or impossible to clean from it? 

 

Can I use plastic cereal bowls that we already have? I think glass-based bowls/plates would be okay but I'm not sure. I think I will start washing my own dishes to ensure they remain gluten-free. But what about plastic/rubber/silicone spatulas? Mom refuses to buy new kitchen utensils and plates/bowls. She said she would just wash them in the dishwasher and that would make them clean. Well I've read that it takes 500 degree F heat to make gluten inert. I'm sure our dishwasher doesn't hit 500 degrees heat. And I know heat like that would totally ruin our plastic bowls and spatulas. Probably even the silicone spatulas.

 

I'm really at a loss as to what to do here. I feel so isolated. 

 

The pots and pans we have might be okay but I also got glutened at dinner last night. Mom cooked. She put my twice baked potato in the same baking dish near my parents gluten-filled potato things (like a breaded, cheesy mashed potato ball thing) but she said they were not touching. She cooked the chicken breasts on our teflon-coated skillet. I didn't have any issues with our garlic salt or pepper so it wasn't that that glutened me.

 

She made corn as well, but I don't know if she microwaved it or did it in a skillet. It's canned corn which I had 2 days ago and didn't have an issue with it.

 

She of course used utensils that I'm sure are thoroughly glutened.

 

I have no idea what to do or how to help mom come to the conclusion that this really is a big deal for me. She keeps saying "you'll be fine" in a condescending tone. she does that a lot when she's just blowing me off. It ticks me off hearing her say that and making me feel like I'm crazy.

 

I'm not crazy darn it! I'm seriously thinking about trying to find a low cost family counseling center or doctor to force her to go to with me.

 

Another thing - I have pre-diabetes and she will bake and cook tons of super sugary things and have no problem with me eating them but on the rare occasion I purchase a candy bar or something she freaks out and tries to limit me eating it. I just don't get it! She's not right in the head! ARGH!


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#14 NoGlutenCooties

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Posted 01 March 2014 - 10:54 AM

I know some folks on here advocate for having separate plastic utensils, bowls, and storage containers so I may get a lot of push-back for what I'm about to say... but as long as you clean it well, it's fine.  My uncle is Celiac and has been gluten-free for over 15 years.  My aunt eats normal.  They keep a shared kitchen and share all of the plastic stuff and he's never had an issue - and he's very sensitive.  So while it may be easier to keep these things separate, it isn't necessary.  So as long as you clean it very well, buying all new stuff isn't needed.

 

Cutting boards and toasters are a whole different story - those never come completely clean.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#15 learning2cope

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Posted 01 March 2014 - 11:36 AM

A great thing happened! Mom is so much better dealing with this. Mom and dad went to the store yesterday evening and picked up a good amount of gluten-free food like pasta to try, 2 bread mixes and an all purpose flour, 3 gluten-free cereals, and the gluten-free Bisquick pancake mix. 

 

We tried the Bisquick today for our biscuits and it wasn't bad at all! I really liked it! We've tried store bought gluten-free bread before and it was just awful but this was really good! Hopefully the mixes we buy will be nearly as good or better! I'm hopeful. Even if we don't find a gluten-free brad mix that is good it's not a huge deal. I had a sandwich last night made with Mission white corn tortillas and the first 2 or 3 bites were really weird but after that it was pretty good. Had a mexican food taste which I rather enjoyed.

 

We'll see how I do with our regular plastic utensils. Nothing we ate for breakfast had gluten in it. We used our usual skillet, mom lined her old metal baking dish with parchment paper for the biscuits. She used an old plastic spatula for the eggs.

 

I'm noticing a moderate reaction right now. Nauseated, bloated. May have to go to the bathroom soon. Mom said everything was washed VERY well. I'm not sure what to believe. Oh well. Hopefully the longer I am gluten-free these food issues will go away, unless it is a true gluten reaction.


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