Diagnosis, Diet, Symptoms Etc

[AndreaB]

I was just curious at to people's diet before diagnosis, whether official or self diagnosis.

Also whether anyone had symptoms that something was wrong etc.

If you think of things not mentioned on the poll, please write and include it if you wish.

I always miss something.

To get the ball rolling, we were on a vegan diet before allergy tests. Then tested through enterolab with 3 out of 4 of us positive. We are now back on a meat eating diet.

No symptoms before diagnosis through enterolab, but daughter had tummy troubles and diarrhea after eating a gluten cookie ealier this week (from Grandma). Not sure in oat granola also contributed.

[CarlaB]

I wish there was a way to mark more symptoms ... I had them all except headaches. My bloodwork was negative, but I hadn't eaten a significant amount of wheat in three years because it made me sick, so I used Enterolab.

[jerseyangel]

I had every one of the symptoms--plus a few more that weren't listed (anemia, neuropathy, anxiety). I was diagnosed thru biopsy and positive diet result.

[AndreaB]

That's interesting Carla about not eating that much wheat.

You can't choose more than one option on the poll? I thought you could do multiple choices but have never tried it myself.

Being vegan I made my own whole wheat bread with flour I ground. I also made gluten as well as buying Companion brand gluten with also had soybean oil and extract in it. We ate gluten, wheat and/or soy about every day, if not every day.

[nikki-uk]

There was no option for

Negative blood work-Positive biopsy,

and for the most part my hubbies symptoms were fatigue and joint pains (he didn't get tummy probs until a few months before dx)- & only a 2 week spell of D!!

He likes to do things differently!

[AndreaB]

There was no option for

Negative blood work-Positive biopsy,

and for the most part my hubbies symptoms were fatigue and joint pains (he didn't get tummy probs until a few months before dx)- & only a 2 week spell of D!!

He likes to do things differently!

I didn't realize that you could be negative on blood work and still have a biopsy.

Sorry I missed that one. I tried to include things that I've read on this forum.

[jerseyangel]

Andrea--My doctor never did the blood work on me , he scheduled the endo at my first appointment. He was actually thinking Celiac/gluten intolerance from my symptoms!

[AndreaB]

Patti,

That's really interesting. You learn something new everyday on this forum. And that's a good thing as Martha Stewart would say.

[penguin]

I had/have all of the symptoms except constipation. Man, sometimes I would wish for it though!

I had inconclusive bloodwork and dietary response and that's how I was dx'ed. I'm back on wheat for now though since I have an endo in August. Dr. says I'll always have to be gluten-free anyway since I'm duh intolerant, but we want to see if there is damage going on.

I think my bloodwork may have been skewed, because I definitely didn't eat Dr. Green's reccommendation of 4 slices of bread (or equivalent) a day. I stopped liking bread, pasta, gluteny things in general over time and never even realized it. I never ate pasta anymore (used to be my favorite!) because it made me sick

The funny things is that when I went gluten-free, I realized I hardly ate gluten to begin with! Even all of my spices and personal products were already gluten-free

[dlp252]

For the diagnosis question, I actually started the diet first, then had a positive diagnosis from Enterolab, THEN had the blood tests done, lol. I ended up picking "positive through Enterolab, no blood tests", because neither my doctor NOR I thought we'd see anything on the blood tests, but ran them anyway for a baseline. I also had started to see positive dietary response before the Enterolab testing, but not a lot because it was only about a month so didn't choose that one.

For the symptoms question, I needed an "All of the above symptoms, plus more"...so just picked diarrhea, but really I had all the ones you listed and more.

For the diet question, before going gluten free I was on a low carb/anti candida rotation diet (but had fallen off the program which is how I figured out I had a gluten problem), eating a variety of meats and fish, veggies, fruit and a little bit of alternative grains (not much) and a little yogurt.

[eKatherine]

None of the symptoms fit me. I'd have selected "joint pain" and "swelling" if they were there, though.

[tarnalberry]

I was another "inconclusive blood work, positive dietary response" group that wasn't an option (so I checked other). I also had more than one symptom, but of course, our polls don't allow that sort of response.

[Ursa Major]

I am another one who would say, 'All of the symptoms, plus more', but chose tummy troubles, since I had those for many, many years. But I've had backaches and joint and muscle pains from the age of three.

Chelsea, I forgot about your gluten challenge until I saw your response. It may be responsible for your iron deficiency.

[penguin]

Chelsea, I forgot about your gluten challenge until I saw your response. It may be responsible for your iron deficiency.

I wouldn't be too terribly surprised. I'm interested to see what my bone densinometry comes up with.

[Rachel--24]

I had all of the symptoms listed plus a whole lot more...I picked brainfog since it was one of my worst.

For diagnosis I'm negative bloodwork, positive Enterolab. I had been on the diet 2 weeks before the bloodwork so it may have made a difference, may not have....I dont know for sure. I do know I felt decent those 2 weeks and after the test results came back I resumed my normal processed food, convenience diet and everything went to hell pretty quickly. I was way worse off than before I'd tried the diet and I started losing alot of weight....25 lbs. total.

I ended up putting myself on the candida diet and miracles happened....I got way better except didnt gain any weight back. I was on this diet for 4 months before doing Enterolab tests. I was only eating meat, fish and veggies. No grains, no fruit, nothing processed and I only drank water. 4 months of this and my Enterolab still came back positive. Now I've gained back about 15 of the 25 lbs. I had lost.

[natalunia]

I had all the symptoms except constipation. Diarrhea was my main complaint. I had it about once a week or more for over 8 months. I thought I had giardia at first (DD came home from orphanage in Russia with it).

My bloodwork was negative, but I had been avoiding anything made with wheat for 6-7 months prior to diagnosis (It was 2-3 months after I started having diarrhea once a week or more when I linked the diarrhea with when I ate cake or pasta- I seldom ate bread, cookies, or crackers), with the exception of the 2 weeks prior to my bloodwork, when I ate wheat products, but I still didn't eat that much wheat products, so I am not too surprised they came back negative. My doctor said my dietary response was good enough for him once my colonoscopy showed I did not have microscopic colitis.

[olalisa]

I also had ALL the symptoms plus anemia, constant foot cramps, severe edema. Wow, do I feel better after going gluten free! Sometimes the progress is so slow I get frustrated, but this puts it in perspective--THANKS!

[CarlaB]

That's interesting Carla about not eating that much wheat.

This was because after a 21-day round of antibiotics I had joint pain. I thought maybe it was a candida problem and cut out carbs and took probiotics to kill them off. I was basically on the Atkins diet (with lots of veggies), but gained 10 pounds! I was having other health problems -- night sweats, hot flashes, and I would hyperventilate -- so after the anti-candida diet, I went on a rotation diet and discovered I got sick if I ate wheat. I tried to start eating it again occassionally after a couple years thinking it was some kind of dietary sensitivity that I could just be careful of. I then started losing a pound per week for four months with IBS syptoms. So, I had been off wheat for three years before getting tested. I then went on a gluten challenge for the endoscopy for six weeks, which made me feel like Chelsea has been describing. My endoscopy was negative/inconclusive.

[wolfie]

I may have checked the wrong thing. I chose "positive bloodwork, negative biopsy" but never did the biopsy b/c I had such a positive dietary response (didn't know not to go gluten-free before GI appt). So my response probably should have been other b/c it was positive bloodwork, positive dietary response.

I also had multiple symptoms on the list.

[AndreaB]

I wouldn't be too terribly surprised. I'm interested to see what my bone densinometry comes up with.

Please keep us posted on that as well.

I wouldn't want to do a gluten challenge and I didn't even have any symptoms. You have to wait until August!?

[Lauren M]

I think I may be unique... I checked "other" b/c I never had the bloodwork, just the biopsy, which was positive for celiac disease.

The GI saw that I had intestinal damage during an endoscopy to check my pancreas (follow-up after I had pancreatitis and still wasn't feeling quite "right"). He took a biopsy right then and diagnosed me after analyzing it.

However, I wonder since I never had the bloodwork - can you have false positive biopsies? My doctor (Dr. Fasano) assures me I have celiac disease, but my "symptoms" are so inconsistent that I wonder sometimes- prob just wishful thinking!

- Lauren

[penguin]

Please keep us posted on that as well.

I wouldn't want to do a gluten challenge and I didn't even have any symptoms. You have to wait until August!?

To have the best chance at a positive biopsy, you have to be eating the equivalent of 4 slices of bread a day for 3 months. My biopsy is August 21st, 3 months and two days after starting the challenge

[Guest Robbin]

I had chronic D for many years that took a rapid turn for the worse in Nov. last year. I also had all the other symptoms except constipation. Severe muscle and joint pain and fatigue were almost as bad as the D sometimes. (Almost )

P.S. Lauren, I think we all experience "wishful thinking" at various times.

[kabowman]

I had no blood work but the biopsy was negative. I had been *mostly* wheat free for about 1-2 years but had completly eliminated it about 3 months before the biopsy - no damage found. I refused to go back on gluten because of the positive dietary response.

As to symptoms, I had most and many more including joint pain but I picked tummy troubles because that was the main problem which led to the D.

I just talked to my allergist about how long it is safe to use imodium because I have had a problem for the last month - which I have now figured out - and he said a month is too long to have D - something must be wrong, maybe a parasite, I really had to bite my tongue because what I WANTED to say was, 1 MONTH? Try 8+ YEARS!!! Do you really have a clue? But, I didn't because most people don't understand and think that 2-3 times every morning is probably too much then sometimes in the evening too - always D. Can't really remember when I was ever even close to normal.

Diet, I was already dairy free due to lactose/casein intolerance but eat meat and veggies.

[AndreaB]

I had no blood work but the biopsy was negative. I had been *mostly* wheat free for about 1-2 years but had completly eliminated it about 3 months before the biopsy - no damage found. I refused to go back on gluten because of the positive dietary response.

As to symptoms, I had most and many more including joint pain but I picked tummy troubles because that was the main problem which led to the D.

I just talked to my allergist about how long it is safe to use imodium because I have had a problem for the last month - which I have now figured out - and he said a month is too long to have D - something must be wrong, maybe a parasite, I really had to bite my tongue because what I WANTED to say was, 1 MONTH? Try 8+ YEARS!!! Do you really have a clue? But, I didn't because most people don't understand and think that 2-3 times every morning is probably too much then sometimes in the evening too - always D. Can't really remember when I was ever even close to normal.

Diet, I was already dairy free due to lactose/casein intolerance but eat meat and veggies.

Kate,

I hope you find what's bothering you soon.

I was looking at your sig. Are you aware of the hidden msg in foods. JulieM had posted a link www.truthinlabeling.org/hiddensources.html and Rachel--24 has discovered that msg is sprayed on a lot of crops. Don't know if it is organic and conventional or not. It's called auxi-gro. One of the big organic distributors in the US sprays it on their crops.

Happy belated birthday! Hope it was a good one.

I think I may be unique... I checked "other" b/c I never had the bloodwork, just the biopsy, which was positive for celiac disease.

The GI saw that I had intestinal damage during an endoscopy to check my pancreas (follow-up after I had pancreatitis and still wasn't feeling quite "right"). He took a biopsy right then and diagnosed me after analyzing it.

However, I wonder since I never had the bloodwork - can you have false positive biopsies? My doctor (Dr. Fasano) assures me I have celiac disease, but my "symptoms" are so inconsistent that I wonder sometimes- prob just wishful thinking!

- Lauren

From what I have read on this forum...it is possible to have a false negative but not a false positive for the biopsy. How long have you been gluten free. Are you aware that soy can also do damage to the intestines (according to what I've read online, possible an excerpt from the dark side of soy). Do you have any other food allergies that could be causing problems? Have you or do you want to try a gluten challenge?

I may have checked the wrong thing. I chose "positive bloodwork, negative biopsy" but never did the biopsy b/c I had such a positive dietary response (didn't know not to go gluten-free before GI appt). So my response probably should have been other b/c it was positive bloodwork, positive dietary response.

I also had multiple symptoms on the list.

Kim,

I was just looking at your sig. Keep up posted about your son's results after his appointment in August please.