JenHarris

Weird thing is, just after writing the above post I started chilling and running fever. Ran fever (little over 100) for about 16 hours, couldn't eat, and then fever was gone. Woke up yesterday morning feeling better except for a headache and my stomach's still very very sensitive, and I had a round of extremely loose stool yesterday too. Stomach is still sensitive today. I am starting to think the fever may have been gluten related???

Can super sensitive gluten intolerant patients run fever with being glutened?

As of right now I've only been diagnosed Gluten Intolerant. My initial round of Celiac testing came back negative (including biopsies, but only 2 were done). I was not happy with the first doc at all and went to a new GI doc. My new doctor says I wasn't on a proper gluten challenge and the right blood tests weren't done to be completely conclusive. He wants to redo all of the testing (including biopsies- getting 7 this time) and go ahead with the genetic test. I'm not starting that all until this fall.

By the way.... I hadn't been out of the house to be exposed to anyone in the previous 72 hours, and I had not been around anyone who was sick at all in the past 2 weeks that I know of.

  On 7/1/2011 at 1:41 PM, Mummyto3 said:

Rang drs surgery yesterday for coeliac results and was told they were 'normal'. I rang back today to find out exactly what was tested (didn't think to ask yesterday) and was told they weren't back! We'd had other blood tests done at same time, which I mentioned and they were normal, which I was told on Monday/Tues. I was confused for a normal result as I have the symptoms and my daughter has it too. Think gluten is affecting me now as my head is everywhere and I'm struggling to type (had some crisps). I'm so sure I have it..

Just remember, you can have pretty much all of the outward symptoms of Coeliac (except for DH) and be gluten intolerant/sensitive. Me and my son both have symptoms and I'm going to go through my second round of testing later this year because according to my new doctor, the testing I had two months ago wasn't done right and therefore can't be deemed conclusive, so I encourage you to make sure they are doing the right testing on you. And you might see if they will do genetic testing as well.

I got cross contaminated from the peanut butter jar and didn't have symptoms until the middle of the night. Now I feel like I've got stomach flu... complete with body aches, terrible backache, horrible cramping and nausea. I'd made it over a month without even getting slightly glutened. (I was on a gluten challenge til the middle of April and then went back to gluten free but got glutened at a restaurant by salad dressing.)

I'd almost forgotten how bad I can feel. THIS SUCKS!!! I only discovered I'm gluten intolerant about 6 months ago (although I've had the symptoms all my life.) We've discovered my 2 year old son is gluten intolerant as well, so at least we caught it early for him.

I guess I can be thankful that my throat hasn't swelled up like it does sometimes, but at least that goes away with benadryl. I haven't had body aches and the whole list of symptoms since April when I was constantly eating gluten for the challenge.

Just needed to vent a little. I get so frustrated I want to cry. I'm still getting used to the fact that there are so many things I can't eat anymore without checking labels, and it's hard to realize that I can't trust anybody when they say something is gluten free. My in-laws were visiting and contaminated the jelly jar right in front of me and I didn't notice until my husband caught me before I put it on my gluten-free bread. I mean it was a lesson for them how sensitive I am and they were nice and understanding about it, but it's still hard to constantly be educating other people.

Oh, I know that going gluten-free will solve it... it's just that I'd really like to have a firm diagnosis for tax purposes so we can write off some of the food cost, and for my piece of mind after years of unexplained symptoms. My son has Cystic Fibrosis and Short Bowel Syndrome so we pay through the nose for his medical expenses (just for meds and regular doctor visits on a good month, we pay $300- and that's with insurance... on a bad month, we can pay $600 or more).

And the fact that my son seems to be gluten sensitive too means we will be transitioning to a gluten-free household so I can prevent cross contamination. Eventually I'll be getting rid of all of our wheat-based flours and getting rid of all of our pasta and bread that is not gluten free since my husband is the only one left in the household who isn't gluten-sensitive. Thank you for the sympathy/empathy. It does mean a lot to know that there are other people going through the same frustrations.

SO unbelievably frustrated and so mad I could scream right now. My doctor shouldn't even be a doctor!! I had an upper GI done two weeks ago and just found out my 'Baylor and Mayo- accredited' doctor only took 3 biopsies, and now all he wants to do is put me on a year's worth of Omeprazole and apparently call it a day. This is a load of $&*+!!!! I got a one paragraph explanation of findings in the mail (benign biopsy findings), and no explanation of what could be causing my ulcers or esophageal damage, or the bowel inflammation that was found during the scope. And no mention of the need to schedule a follow-up.

Is this a joke?! Has anybody else dealt with this? I just don't know what to do anymore. Is it worth pursuing further testing or should I just forget it and stick to going gluten-free?

Thanks. I am back to a gluten free diet today. My reactions have been severe enough that I'm trying to find airtight containers for flours, I have my own peanut butter jar, I don't use butter, or the toaster and I've sorted my cabinets by gluten-free and gluten-y foods.

I now suspect my son might be sensitive as well. He starts blood work next week. I'm a little scared if he has it. He has Cystic Fibrosis and Short Bowel Syndrome already and any other damaging diseases to his small bowel could cause major damage beyond the diseases he has already. :-/ Due to the Short Bowel, he already has problems with sugar absorption and can't have more than 5-7 grams of sugar per serving. Somehow he's managing to stay at the 50th percentile for weight, but I really don't know how long that's going to last if he is gluten intolerant or has Celiac. I guess it's good that we'll know now rather than later and hopefully we can prevent damage if he does have celiac.

Yep. Sounds like glutening to me. Just like my 'glutened' symptoms too. Fatigue, headache, brain fog followed by not wanting to get off the couch the next day. Cross contamination has got me from the peanut butter jar just a couple days ago (presumably from stray bread crumbs transferred), so I feel for you. Now we have his and hers peanut butter jars.

I had an upper endoscopy today and had some very interesting findings for someone who is just, 'gluten-intolerant' so I'm actually hoping the biopsies show I'm positive for Celiac despite negative IGA... or at least that it leads to some diagnosis other than 'IBS'.

Here's what the official report said and the doctor's comments to me.

I had grade A esophagitis (esophageal damage from reflux), gastric mucosal abnormality characterized by erythema (he said there were lots of small ulcerated spots on the lower half of my stomach) and finally, erythematous duodenopathy (inflammation of the small bowel). All of these spots were biopsied. He is very intrigued considering how severe my reactions to gluten seem to be. He has told me I'm one of the most severely reactive 'gluten sensitives' he has seen if I'm not celiac.

Results from the biopsies should be back next week. Anybody else have these findings at your endoscopy???

Tonight I accidentally glutened myself with chili beans (which had modified food starch unbeknownst to me), and within 15 minutes of having my meal I had a severe headache and noticed my hands shaking. (This was 45 minutes ago now). No stomach cramping yet, but I'm sure that's coming. The pain is extending all the way down the back of my head and into my neck and my throat is hurting and seems swollen too... Is this an allergic reaction????

Here are the results. He gave me a copy and went over each result with me.

tTG IgA: 0

Gliadin IgA: 2

Gliadin IgG: 10

IgA, Total: 305

Vitamin B12: 903.4

He also did a Lipid Panel- which was normal. Amylase and Lipase levels were also normal.

Oh, and yes, I have been having pain on right side just below ribs that radiates to the back on occasion, so I'm sure that's why he's testing my gallbladder.

I got the results this morning. Celiac panel was totally negative. The doctor says he thinks I just have severe gluten intolerance and admitted he was surprised I wasn't positive for Celiac. He also said I absolutely don't have IBS... that it was a lazy diagnosis from previous doctors. He's putting me on Miralax to help regulate me and he still wants to do a Hida Scan, and possibly an endoscopy if things don't improve in the next month of being gluten-free.

Frustrated because yet again, I have all these symptoms and don't seem to have a concrete diagnosis.

He also says that even though I'm not lactose intolerant- I'm 'lactose-sensitive' and should avoid it until I give my body some time to recover from being glutened.

Anybody else had similar experiences to this???

I've been gluten free for most of this week and dairy-free for the last three days. I can't tell you how much better I feel! I was commenting to my husband that this is the first time I can truly say I've gone all day without stomach distress of some type (GERD or IBS-like symptoms). My stomach has been completely content all day. I'm not bloated. I've had tons of energy today, (which is not the norm for me). It's freaking awesome.

Now I'm just curious to see what my celiac panel shows. One thing's for certain. No matter what it shows, I'm continuing a Gluten-free lifestyle.

I'm so frustrated. I went in for my lactose intolerance test (hydrogen breath test) and it was nothing like I expected. Everywhere I'd read about procedure, I was supposed to drink 12 oz. of whole milk 3 hours before the test, go in and be given a challenge dose of lactose, the subsequently blow into the breath machine every 15-30 minutes for 3 hours following. I go in, fully expecting to sit for 3 hours for thorough testing. They take me back into the room, the nurse hands me the machine (not even mentioning a challenge dose) and says 'blow'. I blew once. She said I was negative, and that I could go?! WTHeck?

Is this common practice now? Or should I go to someone else who will do a more thorough test? The crazy thing is that I was on the verge of throwing up from the milk on my empty stomach and now I'm cramping. Can I just be lactose sensitive without it showing up in this test?

All I want at this point is some sort of diagnosis of my problems and I'm just becoming more and more frustrated. How in the world can I have Fibromyalgia, CFS, IBS, GERD, Asthma, and Vitamin deficiencies and it not all be connected somehow medically? I'm sick and tired of doctors saying that it 'must be due to stress'. That is not a good enough answer for me anymore.

Does your daughter have any other issues besides failure to thrive? Does she have frequent lung problems or get sick with head colds a lot? Does she have any known vitamin deficiencies?

I too have had this. And it does happen more with being sick, but I've had it with migraines too. My husband thought it was so weird that I couldn't wear anything but super loose clothing when I used to have migraines.

I definitely have similar symptoms to you. I've measured and found as much as a 5 inch difference in my waistline on days that I bloat. Prime example... I felt ok all day yesterday after being gluten free for the first time in a month (gluten challenge for testing). Then I went to dinner with some friends. The corn tortilla chips and tortillas were supposedly gluten free, but somehow I got dosed and I was up half the night with severe distension, nausea, severe stomach upset and cramping. I'm still bloated today and have cramping, but nausea is gone.

I get my blood test results on Monday hopefully. Hang in there.

I went to my new Gastroenterologist today. I like him so far and was really impressed with the detailed questions he asked me about my history. He immediately ordered the blood tests today and said we'd have results by Monday. He also wants to do a hydrogen breath test on me to see about lactose intolerance since I seem to have such severe reactions to lactose at times (alfredo sauce makes me puke like no other and ice cream can mean digestive distress for days after), and that's scheduled for next Thursday. So I guess we'll see!

It felt good to actually have someone tell me I made the right decision to be seen and get tested. He said he couldn't diagnose the rash on my head, but the fact that it came back when I went back on Gluten made it pretty clear to him that it's definitely related to Gluten Intolerance or Celiac. If things aren't made clear by the blood test, then he said he will go ahead and schedule an endoscopy and do the biopsies. He promised me we will do everything we can to find an answer and that IBS shouldn't be a sufficient diagnosis unless we've exhausted testing and there's no other explanation.

He also told me that I could go back to being Gluten free because he will be able to see the damage without me doing a gluten challenge since I've had such a severe reaction to going back on Gluten.

Does this sound like an appropriate treatment plan to you all?

It definitely seems to be related for me. I have a rash only on my scalp that I've had for as long as I can remember and it went away when I went mostly gluten free and switched to an organic shampoo with no wheat in it. Now... I'm back on gluten rich diet before celiac testing and guess what? The rash is back! I'm still using the same organic shampoo and I haven't changed anything else, so it's got to be gluten. Sounds like we have the same rash too! Little acne-like bumps that look sometimes like little tiny blisters. At least I know what it is now and no matter whether I have celiac or just gluten intolerance, I'm going gluten-free completely after testing.

I'm on a gluten challenge right now and miserable (appointment with doc on 25th of this month and testing thereafter). I wasn't entirely gluten free before, but I'd say I was only at about 10% or less that could possibly have gluten because I had begun noticing that breads/wheat seemed to cause me problems and had eliminated as much as possible from my diet... until I discovered celiac or Gluten intolerance could be causing my problems.

Here's the interesting thing. While I was on a considerably diminished diet for several months, my scalp rash (almost like tiny little blisters) and keratosis pilaris basically went away. Within a week of going back on a high gluten diet, rash came back with a force.

My stomach is in knots all the time... headaches are aplenty, muscle stiffness, bloating, really bad irregularity... all of it is back.

I guess my question is this... could the rash/keratosis pilaris be caused by the Gluten? Anybody else have a similar scalp rash when on gluten?

Thanks for the advice. I have an appointment at the end of the month with a local GI specialist who is known for dealing with celiac. I'm limiting myself to 2 slices of bread a day. For the most part I am miserable, alternating between constipation/diarrhea and horrible bloating, sometimes stomach cramps, and frequent headaches. I hope to God this means answers, and if nothing else even if I can't be diagnosed with Celiac, I will definitely be going gluten free from post testing on out. I hadn't realized how different/better I felt when I wasn't eating gluten.

  On 3/3/2011 at 4:54 PM, cassP said:

yes it all fits- all your symptoms are suspicious.. even having a family member with a different autoimmne disease .. many families have a few different AI diseases floating around..

and i never lost weight with celiac either. many of us were overweight and constipated.

good luck with your testing and make sure you're eating enough of a gluten challenge before testing, so that it's accurate. 4-6 slices a day 4-6 weeks or longer. i only did 2 weeks, and my tests were pretty weak

OMG... I will be MISERABLE if I eat that much bread! I bloat severely for a couple of days with just 2 pieces of bread. Seriously? They recommend that much bread before the test???

I have a long history of intestinal problems and have been diagnosed with IBS, but I've always wondered if it was something more.

I frequently have bloating, stomach upset, and diarrhea. I'm lactose intolerant and severely vitamin D deficient. I have degenerative disc disease and asthma and consistently get sick with everything under the sun including severe frequent sinus infections/bronchitis pneumonia, and frequent stomach 'bugs'. I've been tested for Cystic fibrosis (my son has the disease) and so far everything is negative.

Does/Can any or all of this fall under the Celiac disease umbrella? I'm just looking for answers after years and years of repeated illness and seemingly no answers. I've been tested for immune disorders, but I seriously doubt I've been checked for celiac's. According to every test ever run, I have an extremely strong immune system, but it's never added up as to why I get sick so often. I'm tired, have muscle pain, and go through days I really don't feel like doing anything because my energy level is so low...and that's on the days I'm not sick with something. The one thing that doesn't fit with Celiac's is that I don't have any issues with weight loss. (I've lost 30 lbs recently through diet and exercise, but it's been a struggle all my life to lose weight. Currently I'm at the lowest weight in 6 years and about 35 lbs away from my ideal weight.

Any advice would be appreciated. I'm desperate.