Just Starting The Process

[Robinchk]

I have been what I'd call not well for about 3 years. I have had 3 beautiful children, and 3 miscarriages. I am 29 years old now and feel like I am 90 some days. Right now I am afraid I won't live to see my kids grow up. They are 6, 7 and 9 and they don't understand why Mommy is sick all the time. We used to spend our time hiking, playing in the backyard, swimming and too many other activities to mention. Now I can hardly do anything. I am just too tired or too sore or just can't move. About a year ago things went from general not feeling well to really bad. In the past year I have lost 70lbs, have SEVERE joint pain, extreme fatigue, brain fog, and I am scared! Two weeks before my 28th birthday I had a hysterectomy and surprise, surprise I don't feel any better. About 3 months ago I had a small bowel follow through done that showed I have some type of malabsorbtion problem, the barium should take 2-3 hours to go through, mine took only 1/2 hour. This is the first time Celiac disease came up. I thought finally we're getting somewhere. So I started doing research on it and I found out that I can place symptoms of this disease back to highschool days, about 15 years of things that have been put off by doctors to depression, stress, IBS, and multiple other diagnoses. In my research mission I found out that Dermatitis Herpetiformis is common. From the time I was 16 until I was 23 years old I had severe excema ( that's what the doctors called it). The first time it appear the doctor told me I had scabies.... at 16 I was nauseated by this, I was embarassed and felt gross. Two weeks later I had to go to emergency department because my hands had swelled to bad I had to go get my rings cut off and I had red streaking up my arms. The emerg. doctor told me I had blood poisoning due to the infection in my hands from using the treatment for scabies and I excema not scabies. So I felt a little better. All I had to do was take an antibiotic and start using cream to treat the excema..... then I realized none of this worked. I couldn't open a door, do up my own pants, dressing my self was almost impossible. Now I know that this is actually a symptom of celiac. In the last year I have been told by doctors that I have IBS, depression, that I am anorexic and if I just eat more I would be fine...... I eat more than my 3 children and my husband put together most days.... I never feel full. Well in September I decided to go gluten free since no one else had any better ideas. I figured worse case scenario it wouldn't help. Well within 3 weeks or so I noticed I felt better... not great but better. On December 2nd I had a doctors appt. and he scheduled an endoscopy and gastroscopy for December 21st and suggested I go off the gluten free diet until then just to make sure that they could see "it". I thought great I get to eat all my old favorites for a few weeks.... UGH! Was I wrong the first 3 days of eating gluten were the worst experience ever. Every time I ate I was bed ridden, the pain was unbearable. My joint pain came back, my headaches came back, the bloating, the diarrhea, the constapation, it ALL came back worse than ever!!!!! I am now convinced that I definately have celiac but I have to wait until mid-January to get the results.

Sorry for the rant but atleast I know that those of you reading this will understand and not just think I am over exagerating or complaining about little things. It amazes me that even my family thinks I am going crazy I wish they could walk in my shoes for just a little while, then they would gladly help out when I tell them I just can't do things. I hope the results come back that I tested positive for celiacs then atleast I have a name for what I am constantly fighting and maybe people and doctors will take me more seriously!!!

Thanks for listening to my rant!

[Imanistj]

Did you have the biopsy on the 21st, and did you stay on gluten until then? I had a doctor who told me I didn't have to go back on gluten before the test. I did, but it was less than two weeks and then I had the biopsy. Now I have a positive transglutaminase, a blood test that is considered very indicative, positive genetic testing and a completely normal biopsy. I don't know that I can believe that doctor's diagnosis because I never felt better while on a strict gluten-free diet. Not KNOWING, without a doubt, is driving me crazy. I asked the doc to send my records to a different gastro and he put me back on gluten for six weeks. I will be retested in mid January. I am loving eating regular food and I don't feel any worse.

Since you felt better while on the gluten-free diet, and if your biopsy is positive, I would expect going on a very strict gluten-free diet might result in a big improvement for you. Following the diet is a chore and it will be more than difficult if your family doesn't take the need to avoid gluten very seriously. I would never ask anyone who doesn't have celiac to go gluten-free just to help me, as long as they accepted they have to be fastidious in their effort to protect me from CC. I believe if I lived with someone who wouldn't comply with my need to eat gluten-free then I would declare the entire house a gluten-free zone. They would have to eat out to get gluten. Having a totally clear diagnosis helps force doubters to comply with your needs. For your sake, I hope the biopsy comes back positive. I fully understand the torment of waiting weeks for information to come back. If you have had the biopsy the doctor should have the results within a few days if he used a local pathologist. Maybe you can call the office after Christmas and ask for you test results. Good luck!

[tarnalberry]

Doctors like objective evidence. Your experiences, though COMPLETELY VALID, are not *objective* evidence. (They are subjective, and often seen as "not as valuable" for doctors, because they can't quantify it and have clear yes/no answers from it.)

If you know that going gluten free helps you, once your testing is done, go - and stay - gluten free. If you don't feel you need testing, you don't have to have it in order to follow a gluten free diet.

[amberlynn]

jeez, had a nice long post that my 2 year old deleted .

I'm also 29, and have long felt much older than my years! Not as severely as you seem to, but I definitely understand where you're coming from. I felt like a horrible mom b/c I didn't have the energy to really deal with my kids. I went through all the motions, but when you've got 2 kids, 2 years apart, and one with Autism who has high energy and likes to run , people just assume you're exhausted all the time, lol. But my exhaustion started before high school. I honestly think its a miracle I made it through school and college! My DH was tired of listening to me complain about the joint pain, not being to stand or walk for long periods of time, and being soooo tired. It wasn't until my nausea got SO BAD - I actually thought I was pregnant again, to my surprise all 8 tests came back negative, lol - and my migraines got to the point where I was having at LEAST one a week, if not more, that my DH urged me to try the gluten-free diet again (I'd been on one previously when nursing my oldest son who had many food issues as an infant). I started, and stopped, and finally just DID it. I spoke to my doc who doesn't believe I have Celiac (but I do...), but did encourage me to try an elimination diet. So, here I am. It's been almost 3 months, and honestly, I can't believe I used to live in that pain... Now when I accidentally get gluten, I'm limping around, exhausted, and nauseaus. And that migraine wanders back too. Not fun. I also had the allergy fog, where I just constantly felt like I was in a daze. Couldn't concentrate. Couldn't walk in a straight line either, lol. That's also stopped! I was scheduled to have back surgery last July - turns out it was great that it was cancelled, b/c it was completely unnessary! The debilitating pain in my leg is totally gone! The list just goes on and on and on...

I think you already have your answer. If it were me, I'd just go gluten-free now and save myself the pain. My doc refused to test me, and I can't afford the genetic test, so I may not ever have a true answer. My body tells me that I can't handle it!

[ciavyn]

I gotta agree with amberlynn - if you can't get the proper response, do some of your own diet testing, and see if it helps.

Funny enough, amberlynn - reading your post, I have many, many times been unable to stand for long periods without getting severe pain in my stomach and feeling nauseous. When I was searching for a job, one of my main concerns was having to stand for long periods - and I'm 32 and very active! I felt like an old person. It's amazing what going gluten free can do. I've lost all my join pain, my hip pain, and though I haven't tried it again yet, I bet my stomach pain has lessened if not disappeared, when on my feet for long periods. Thanks for reminding me to be grateful!

[Robinchk]

I wasn't going to go off of the gluten free diet but the Doctor told me that for the test to get accurate results that I would have too. I am personally convinced that celiac is what I have but I need the diagnosis. I live in Canada and if I get the specific diagnosis of celiac disease then I can claim the difference in what I have to pay to buy food as a medical expense for income tax. Which will help out a lot considering the price difference in food here. For example a loaf of normal bread can be purchased for about $2 and a loaf of gluten free bread is about $6. So in the course of a year that definately adds up. I am going back on the gluten free diet now that the test is done.

Thank you all for the input. I am truly hoping that I can get back to the old me. It is really hard for me not to be able to do the things that my kids want to do and I don't feel like I am the Mom that I want to be for my kids.... if I can get my energy back so I can do the things I want to do with my kids again any thing is worth it!!!

[tarnalberry]

Even if you don't get the formal diagnosis (and not only are blood tests subject to false negatives, but there are different "standards" for what positive/negative mean), would you go back to eating gluten? You don't need the special goodies to stay healthy and gluten free (and stuffed full of really tasty food ).

[Robinchk]

I am most definatly going back on gluten free! No questions asked. But with money tight and some gluten free stuff so expensive I am willing to go through it just a little longer!

[amberlynn]

Yeah, if having a formal diagnosis would help me pay for the food afterward, I would probably suffer a little while longer!

But, what if it just a sensitivity and not Celiac? Tests aren't 100%, what do you do then? Just eat the cost? Just curious.

ciavyn - yeah, I'm pretty active too (I went to the gym 3 times a week even). I work retail and have to be on my feet for 8 hours at a time, and for the longest time I had to wear sneakers with a doc note. Now I can wear heels to work . My issue was the hip pain. It was soooo bad. Many mornings I had to sit and go down the stairs!! I'd spend the first hour of the morning stretching out so I could walk. And forget about carrying the baby.... ugh. I am very grateful that I am no longer in pain!

[Robinchk]

If the tests don't come back as celiac then yes I will just eat the cost. I will do whatever it takes to feel better, if not for myself, for my kids. I want to be able to run and play with them. We have a skating rink in our backyard and I want to be able to skate with them for hours like I used to. But if the biopsies they took do show celiac then it will definately help with the cost.

Does anyone else have family members that just don't get the even a small amount of gluten or even just eating it once and a while will make you sick? My Dad thinks I am crazy to follow such a strict diet and I don't think he really believes that it will help all the things that make me feel bad go away.

I get my results in the beginning/mid-January. Keeping my fingers crossed... at least if I have a diagnosis then people will stop telling me I need to eat more and I have even been accused by a doctor as being a drug addict!

[amberlynn]

Oh my!

Yeah, I've got a sinus infection right now, and it started with a nasty cold a month ago. My Dad said "I told you, your body is short on gluten, you need to eat more gluten!" So, its a big fat joke . Whatever. So, it'll take a LONG time, but eventually they might get it. Once you're better and they can see that, it'll help.

Hopefully you're get your diagnosis! Then you can explain that yes, even the smallest, tiniest, invisable piece of gluten can make you VERY ill.

[gfp]

A gluten-free carrot is the same price as any other .... (in other words there is a lot you can eat which is no different in price to non-gluten-free)

Noone has to buy gluten-free bread or pasta ... it is not like we have to have it. (although it is sometimes convenient)

I buy some but very little: I buy gluten-free soy sauce, Kallo stock cubes (which are a little more than others) etc. but I doubt being gluten-free adds more than 5% to my food bills per month and probably a lot less.

There are two keys IMHO:

1/ Adapt what you eat

2/ Adapt how you shop...

Because of the ways supermarkets place food these really become one until you learn to ignore the supermarket product placements.

Plan on 'naturally' gluten-free food, instead of something that needs a substitute, substitutes are often both poor and expensive.

Find a few staples of 'normal' food that is gluten-free, find a real gluten-free corn tortilla ...

If you search the web for gluten-free recipes you tend to find a lot of 'replacement' food.

For example a chilli is easy to make naturally gluten-free .. just use corn starch as a thickener and other than that cook normally. (you could even argue that chilli shouldn't have wheat flour) .. but ...

Onions, meat (or not), beans, cumin, coriander (cilantro) seed plus or minus ( I usually add some celery salt and stock) but that's it but you won't often find stuff so simple because a lot of gluten-free recipes are how to make super gluten-free bread or such...

When I do buy gluten-free stuff its often either pasta (for a change) or something like burger buns for a comfort food day...

There are 1000 recipes that require no gluten at all or simply mean changing flour for something else...

Stick with these and your food bills need not really rise much... and if you're eating as much as the rest of the family together right now then they should decrease when you're gluten-free long enough and your villi repair.

[ymyesha]

Finally, people who understand how I'm feeling. I am a 30 year old mother of 1 and for the past few years, I have felt like a totally unfit mother because I just don't have the energy to do alot of the things I would like to do with my daughter. I suffer from constant fatigue and brain fog, not to mention nausea, diarrhea, constipation, stomach pain, severe anemia, weight loss (30 pounds off an already too-small frame) and a variety of other symptoms that finally led me to the GI's office. Fortunately I found a great doc who suspected celiac within the first month (after eliminating a number of other possibilities). My blood tests have come back positive, however my biopsy results were inconclusive (due to my waking up during the procedure, which is a whole other horror story). My doc recommended that I go gluten-free and he has scheduled a capsule endoscopy and has performed genetic testing in the meantime. I'm still waiting for the results of the genetic test. It's comforting to finally have a diagnosis. For years, my family has accused me of being anorexic when I KNOW that I don't have those body issues and I think I look much better when I have a little more weight. They also blame my pain on depression and anxiety. Now I realize that the weight loss and depression are a result of the celiac disease. I have only been gluten-free for a few days and I haven't seen any difference yet, but I'm hopeful. Does anyone have any advice on how to deal with disbelieving family members, especially during the holidays when everyone is shoving food in your face? It's hard enough denying myself my sister's mac and cheese and cakes without people telling me that it's all in my head. Even my dad (a primary care physician) doesn't seem willing to take me seriously. He told me to "try" following my GI's advice, but he doesn't think I could have celiac because no one on either side of my family has ever been diagnosed with it.

jeez, had a nice long post that my 2 year old deleted .

I'm also 29, and have long felt much older than my years! Not as severely as you seem to, but I definitely understand where you're coming from. I felt like a horrible mom b/c I didn't have the energy to really deal with my kids. I went through all the motions, but when you've got 2 kids, 2 years apart, and one with Autism who has high energy and likes to run , people just assume you're exhausted all the time, lol. But my exhaustion started before high school. I honestly think its a miracle I made it through school and college! My DH was tired of listening to me complain about the joint pain, not being to stand or walk for long periods of time, and being soooo tired. It wasn't until my nausea got SO BAD - I actually thought I was pregnant again, to my surprise all 8 tests came back negative, lol - and my migraines got to the point where I was having at LEAST one a week, if not more, that my DH urged me to try the gluten-free diet again (I'd been on one previously when nursing my oldest son who had many food issues as an infant). I started, and stopped, and finally just DID it. I spoke to my doc who doesn't believe I have Celiac (but I do...), but did encourage me to try an elimination diet. So, here I am. It's been almost 3 months, and honestly, I can't believe I used to live in that pain... Now when I accidentally get gluten, I'm limping around, exhausted, and nauseaus. And that migraine wanders back too. Not fun. I also had the allergy fog, where I just constantly felt like I was in a daze. Couldn't concentrate. Couldn't walk in a straight line either, lol. That's also stopped! I was scheduled to have back surgery last July - turns out it was great that it was cancelled, b/c it was completely unnessary! The debilitating pain in my leg is totally gone! The list just goes on and on and on...

I think you already have your answer. If it were me, I'd just go gluten-free now and save myself the pain. My doc refused to test me, and I can't afford the genetic test, so I may not ever have a true answer. My body tells me that I can't handle it!