Totally Confused and Frustrated

[krisnkar]

I've been having stomach "issues" for as long as I can remember...at least 20 years. They started when I was a teenager. Mostly cramping, bloating, and diarrea immediately following meals. I go through bouts where this will occur with every meal. I'm in one of those bouts right now. I've had upper and lower scopes over the years. I've been told that I had IBS, irritated spots in my intestines, and I've had my galbladder removed. I've been told I was anemic and iron deficient in the past. My most recent blood tests are showing anemia and low thyroid function.

There is a family history of diabetes, IBS, osteoporosis.

I was symptom free for about two years while doing the South Beach diet. I was very strict on this diet...didn't lose much...but felt great! I only allowed myself one whole grain product (bread, rice, pasta) or potato per day. I "fell" off the wagon about 8 months ago and the further away from it I get...the worse I feel.

So...I went to my Dr. who mentioned Celiacs disease and felt that my history and symptoms were sufficient to put me on a gluten free diet. He did the celiacs blood tests...which all came back negative...but the thyroid issue surfaced. He is doing further testing on the thyroid...but just told me to continue the gluten free diet. He did not believe I had a "severe enough" case for the biopsy. I've been told that if I have celiacs...the thyroid medicine won't be effective since its absorbed in the small intstine.

I've been gluten free for over a week...with no stomach relief. Should I expect it this soon? No matter what I eat for breakfast...I experience abdominal pain, bloating, and discomfort for hours. I've tried soy milk and gluten free cereal, eggs and bacon, gf waffle w/nat pb, and gf yogurt all with negative effects.

I have always been a very healthy eater. I only eat fresh veggies and fruits, drink tons of water, only whole grain breads and pasta. As I read the labels on the gf foods, I'm also frustrated that many seem to be higher in fat and calories. With an already low thyroid issue...the last think I want to do is increase my fat and calories.

Without the official diagnosis...I can't help but wonder why I'm doing this to myself. I want to feel better, and I would gladly cut out whatever food is causing me such daily gastric distress...I just don't know how to be sure.

I have also read about the DH and believe that a mysterious rash that has appeared on my buttocks about 5 - 6 times over the past ten years could be DH. After reading the description on line...I couldn't have described it better myself. I've had it looked at in the past only to be told it was probably an alergic reaction to my laundry soap...or dry skin.

I don't have that rash now...and never know when its going to surface again...could be a year from now. Once it does I will certainly request the biopsy. That doesn't help me in the mean time.

I know this is alot of questions for one post...but I figured it was better to get it all out there and let ya'll pick away at it. Any suggestions or thoughts are most welcome!!

[ostrich]

Welcome kris! I hope we can help ya out.

[krisnkar]

Are all celiac's that sensative to all gluten? My Dr. told me to totally cut it out for a while...then when feeling better to let my body tell me how much I can tolerate. He believes that since I felt ok on the SB...having one grain per day...that I would only have to limit the gluten??

I'm definitely more sensative to milk and eggs right now...but having just finished a breakfast of a gf waffle w/nat pb and 1/2 banana...and having the same gut ache as when I eat cereal and milk or eggs and bacon...wth??

Can you suggest an alternative breakfast while my stomach is so sensative? I'm running out of ideas.

[ostrich]

Different people react differently to gluten. Some people can get very sick just from touching or breathing in gluten (like flour). Others get no symptoms at all (called "silent Celiac"). Keep in mind that just because you're not getting any symptoms, doesn't mean you're not doing damage. Silent Celiacs who continue to consume gluten are still hurting themselves.

I would recommend keeping a food journal. Mark down what you ate, what time you ate, how you felt afterwards, etc. In the meantime I'd stick to very simple foods: baked chicken, plain potatoes, etc. You'll find ideas for breakfast, lunch, dinner, and snacks here.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[celiacmaine-iac]

[krisnkar]

Thanks for all the info. I saw some good breakfast ideas.

I have thought about going back to SB since I felt so good. My husband didn't mind it too much either. He even suggested that a couple times. The only thing holding me back is exactly what "ostrich" said. Just because I wasn't having any stomach aches while on SB...doesn't mean I wasn't having a problem. Now that my Dr. has hinted at celiacs and gluten free...wouldn't going back to SB just be sticking my head in the sand? Won't I be making things worse in the future. I've always had problems with anemia...with a stomach too sensative to take the iron...now we add in the thyroid...what's next?

Just talking this through...appreciate the help...

[celiacmaine-iac]

[aklap]

Kris I'm running way short on time, so this will be short...

Do you know what CD tests were run? It is possible for the tTG test come back falsely negative if the damage is not severe. This is been shown in studies. All too often Doc will run this test - and this test alone because it's the latest, greatest test for detecting CD [not really].

Take some time and look thru this thread: Our Thread on Celiac Blood Tests & More Diagnostic Info


Have they found a cause for your anemia? Unexplained anemia is a huge red flag when it comes to CD. Same goes for your thyroid. I would not let the docs dismiss the possibility of CD [or possibly Non Celiac Gluten Sensitivity].
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[krisnkar]

I only meant that SB allows some grains; therefore, it allows gluten. I can see your point about doing SB without the gluten.

For myself...I would love to say that if I can see that staying gf solves my stomach issues that is all I need. But...my daughter (17) is starting to have some stomach issues. And...there's my in-laws. That's another story.

They were way less than supportive when I was on SB. I tried explaining to my SIL that I was having stomach issues and the Dr. wanted me gluten free...and her response was the eye roll...followed by her shoving some veggie pizza in my face the next chance she had. When I said "no thank you"...there was the huff and puff. We do family dinners there often, and I am dreading the constant battle. I would be better armed in dealing with them with an official diagnosis.

I guess I also believe that my stick-to-it-ness would be stronger if I knew (for sure) that not sticking to it could cause health problems. I may go a year or two gf...just knowing that I feel better, but just like with SB...life happens. My DH went to Iraq...I was left with my own career and his daily farm chores. Let alone the worry and all the other things that come with him being gone. Then when he came home...there was the period of celebration and making up for all the good food he missed out on. Like I said Life happens. I could see myself making this acception/mistake again without the Dx.

Again, I really appreciate your help talking me through this.

[krisnkar]

BTW...the tests my Dr. did were:

Tissue Trans. Antibody IGA - result <3
IGA Serum - Result 141
Gliadin Antibody IGA - result <3

All were either negative or within the normal range.

[yogaprof]

I tested negative for celiac, but a naturopath's testing showed a high gluten intolerance. I have been gluten-free for almost 3 months and am so much healthier. I saw no difference for 3 weeks and then was great. I find it quite easy, but I was very ill with GI problems for 2 years, so I am thrilled to feel well. I really don't care what the tests say; it doesn't hurt to not eat gluten, so why not? yp

[yogaprof]

I wanted to comment on your In-Laws...I know what that is like and I am sorry. my biggest battle when really ill was dealing with people's rude, thoughtless comments. but you know what, it makes you stronger. you learn to look people in the eye and say I know what is best for me. bring your own food, be pleasant, and let them think whatever they please. it is your body, your family, and you are doing the best you can with the info you have.
can you tell I get pretty emotional about this?
hugs, yp

[ostrich]

Kris, if it makes you feel any better, I have the same problems too. And I don't have an official diagnosis. I'm not sure how my family would react if I had one. I'm sure they'd still go with the "little bit can't hurt you" route, since I've been eating gluten for most of my life and I'm still alive. Yogaprof is right. You simply need to stand up for yourself.

That being said, constantly having to defend yourself can certainly wear you down. Do you have other friends or family that you can lean on when that happens?
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

[krisnkar]

Thank you all for sharing your own stories about the (to put it nicely) "challenging" people we all deal with.

DH is supportive, but doesn't always think before he talks. I have expressed my frustration with his family's "reaction" to my dietary restrictions, and he says he understands...BUT...that didn't stop him from making a joke at the last family gathering about all of my diets that he has been subjected to. I know its just the way his family communicates...everything is sarcasm and funny (NOT) digs at each other. Mostly they are a fun group to be around...but sometimes it gets old and hurtful. As an only child...I do tend to be more sensative...which is their reason for my reaction to some of the things they say.

A friend at work has recently had to implement a gluten free diet for her family after her daughter began having motor and vocal ticks. She is extremely supportive.

Another friend at work has her own "basement trouble" (as we call it)...so she is always a sympathic ear.

My mother is always supportive.

Another question...has anyone ever tried somthing like asidopholis (sp?)? I'm having such trouble...I thought that may help me out.

This morning I had a pc of ham wrapped around a pickle slice...and within a few minutes had the gut ache and gas...the same reaction I've had to all variations of breakfast the past few weeks. Normally it is followed by a few trips to the bathroom with D...but since beginning the gf diet...I think I'm constipated. The gut ache and gas is accompanied by the feeling that I have to go...but I can't.

WOW...talk about TMI...I'm sure you are all used to this personal conversation...but it just doesn't seem right. I'm only subjecting you all to this b/c I'm desperate.

[ostrich]

I've tried acidophilus in the past in an effort to aid digestion. They tended to help back then, but I don't use them any more.

It sounds like you and DH need to compromise. DH needs to realize that some of those jabs (which is also how my family works) can hurt, so maybe he can tone them down. And you need to get your skin a bit thicker (and learn how to dish out insults right back ). You could also try diverting the topic whenever you get tired of people harping on you.
_________________
Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of