Getting Anxious - I Feel Like I Am In Limbo. Should I Start To Get Ready For A Gluten Free Diet?

[Virgie]

Hi! Just venting here. I am quite new to this. My daughter was dx on her 13th birthday by testing positive through bloodwork for Celiac. Was told to not change her diet until we could get her to a PedGI at the Mayo Clinic. She will have an endoscopy done with biopsies to further dx. At the moment I feel like I am going crazy waiting for the appt. It is on the 29th. On one hand I feel like I should be getting my kitchen ready for the diet change but on the other hand I feel like I should wait until after the appt. I have done some cleaning out of cake mixes & other baking mixes already but just feel anxious waiting. The waiting is driving me nuts !!!! I want to help my daughter so bad when she has stomach pains but just feel like there isn't much I can do about it yet. The timing I feel is bad being so close to the start of school too. I wish we could have been doing the diet about a month before school had started so that we could have been somewhat comfortable with everything.

Is the bloodwork pretty accurate? Is it accurate enough to start getting ready for the change (like buying a new toaster, pans, wooden spoons, etc.)?? I am getting anxious that they might find more wrong with my daughter. My older son has Ulcerative Colitis and I keep thinking what if she has that too.

I feel like I am a basketcase at the moment. It also doesn't help that I have an infected tooth that needs a root canal done so I am in pain. Probably will have it pulled instead because with everything going on just can not affored to spend $2,000.00 fixing that tooth ARGH!!!

Sorry for venting here. But glad that I could talk to someone about this. My hubby has a hard time understanding these things & is so busy at work that a lot of this gets left up to me.

Thanks again !!

Virgie

son 17 Ulcerative Colitis/ Eosinophilic Esophagitis daughter 13 tested positive for Celiac

[Guest j_mommy]

Hello.....

I waited a month between my positive blood work and the biopsy! I took that month to go through my house and put all the things I couldn't eat into boxes. I ate what I could in a month and the rest was given away. I also started buying gluten-free food but didn't eat it. That way I was ready when I got back from the biopsy and could go gluten-free.

I wanted the biopsy b/c I wanted to know how much damage was done and I wanted that firm dx!!!

Make sure they take lots of samples!!!

I would take these two weeks to start getting ready for gluten-free....that way you don't have to go out and do it all in one day!

Recommend:

Living Gluten Free for Dummies by Dana korn

Celiac Disease:A Hidden Epidemic by Dr. Green

[gfpaperdoll]

regardless of the biopsy, she still has celiac from the postitive blood test.

Yes, your son should be on the same diet, I think ulcerative colitis is just a complication of celiac/gluten problem...

I think the most imporatant thing is to just take the flour canister to the trash because it poofs up & gets in the air & you can breathe it in & it makes you sick. Plus it settles on everything. Most people do not realize this. & if you dump it in the trash in the kitchen & try to save the container - big disaster

[JennyC]

I would keep your daughter on gluten until her biopsy. I would also have your son tested as well. I have seen his condition mentioned on this page numerous times. I agree that you should DEMAND that they take lots of samples during the biopsy. Diagnosis of celiac disease is not always clear cut, although many ignorant doctors believe it is. The golden standard for diagnosis is a positive biopsy. There are more and more studies out that state that positive blood work along with good dietary response to the diet are enough proof of celiac disease, but unfortunately most gastro's don't follow that school of thought. I would start getting ready, but keep her on all the gluten she can handle. You will have a much easier time with follow up care if you get the biopsy. Also keep in mind that it is possible for them to not see the signs of celiac disease during the biopsy even if she does have the disease, either because they did not sample the exact spot that has been damaged or because her damage is not severe enough yet. Either way I would try her on the gluten free diet as soon as the biopsy is complete, and test your son as soon as possible. So go ahead, start buying the foods and the new appliances--just don't use them quite yet!

Sorry for rambling!

[Virgie]

Thank you all for replying. I have been dealing with an infected tooth and haven't been on as much lately. I still feel like I am going nuts waiting for the doctor appt. & scope. I am thinking they will probably want to do a colonoscopy as well being my son has UC & my daughter also has been having bloody diarreha. The prep for that will not be fun for her at all. I just know it. But I want to find out for sure what is all wrong with her.

A question for all of you. My son did get tested for Celiac when we were first trying to find out what was causing his diarreha problem but that was back in 2004. So should he be tested again??? He is already on a restricted diet with his UC so if he has to go gluten free he will be hard to live with. But if he has to he has to & will just have to learn to deal with it.

How does everyone cope emotionally with going gluten free? Ok because you know it will help and make you feel better or do you mourn not being able to eat certain things?? Being my kids are teenagers I am wondering about the drama they will cause because of this.

Thanks again. Counting down the days until we go to the doctor.

Virgie

Hoping it is Celiac and nothing else too.

I would keep your daughter on gluten until her biopsy. I would also have your son tested as well. I have seen his condition mentioned on this page numerous times. I agree that you should DEMAND that they take lots of samples during the biopsy. Diagnosis of celiac disease is not always clear cut, although many ignorant doctors believe it is. The golden standard for diagnosis is a positive biopsy. There are more and more studies out that state that positive blood work along with good dietary response to the diet are enough proof of celiac disease, but unfortunately most gastro's don't follow that school of thought. I would start getting ready, but keep her on all the gluten she can handle. You will have a much easier time with follow up care if you get the biopsy. Also keep in mind that it is possible for them to not see the signs of celiac disease during the biopsy even if she does have the disease, either because they did not sample the exact spot that has been damaged or because her damage is not severe enough yet. Either way I would try her on the gluten free diet as soon as the biopsy is complete, and test your son as soon as possible. So go ahead, start buying the foods and the new appliances--just don't use them quite yet!

Sorry for rambling!

[Mickide]

That is a tough window the time between pos bloodwork and the biopsy, I had to wait about a month between mine. On one hand you feel like just eatting all the gluten you can before you can't and on the other hand you know you are just poisoning your body and don't feel well. For me I did not cut out gluten but started to educate myself (but not nearly enough!) about some gluten free foods. Shopped around for some ideas, read up on some recipes. But reality for me did not set in until after my biopsy when it was very clear I had it. I then was overwhelmed, had nothing to eat for almost a week because I was so unsure about everything. I guess I was just in denial that I had it after the pos bloodwork. Take this time to prepare what you can, so you aren't so stressed after her endoscopy.

Hang in there, you are a good mom doing all your homework! Sorry about your tooth, that stinks..

[Guest j_mommy]

I'm 24.....emtionally I went through it all...I was angry and upset at first(learned vis blood tests in april) and bythe time the biopsy came around I was ok with it(biopsy in may). There are soooo many alternative foods that you can buy to replace the food you are missing. THe hardest thing for me still is bread...I really can't find a bread I would eat as a sandwich! Found good breads for other things though...garlic cheese bread with spegetti ect!!!

Give the kids time...once you realize that gluten was what makes you sick you're ok with being gluten-free!!!

[kbtoyssni]

A question for all of you. My son did get tested for Celiac when we were first trying to find out what was causing his diarreha problem but that was back in 2004. So should he be tested again??? He is already on a restricted diet with his UC so if he has to go gluten free he will be hard to live with. But if he has to he has to & will just have to learn to deal with it.

How does everyone cope emotionally with going gluten free? Ok because you know it will help and make you feel better or do you mourn not being able to eat certain things?? Being my kids are teenagers I am wondering about the drama they will cause because of this.

I would continue getting your son tested, probably yearly. Celiac is often triggered by some trauma to the body so if he has the genes, he may not have celiac now, but he may develop it in the future. It's just something to be aware of and monitor. Plus, at the time of his last blood test, he may not have been eating much gluten or he may have been producing minimal antibodies. For a kid who already has digestive track issues, I'd definitely keep testing.

Emotionally, most people do have some mourning period. It's a major life change so it's only natural. I somehow skipped the mourning phase and jumped right into the "this is the best thing that's ever happened to me, now I don't feel sick anymore!" phase. I think if you can emphasize all the things your daughter can still eat and how yummy gluten-free can be, it will certainly help. And the fact that you have a few weeks to prepare before going cold turkey should help. Does your daughter have favorite foods? Now's a good time to figure how to make them gluten-free. Post them here and we'll help with recipes!

[Darn210]

While you wait, you may want to spend some of your time researching and/or changing some of your mainstream items. I know it was being able to buy mainstream stuff that made it seem not so bad. So for instance, if you are using Betty Crocker au gratin potatos - you new mainstream brand is now Great Value (Wal-Mart) au gratin potatos. If you liked to use the taco bell seasoning mix for tacos - you should now switch to Ortega. etc., etc., blah blah blah.

A good way to do this is to sort your pantry into gluten-free foods and foods with gluten. A lot of the information is online, and some you may need to call. But when you're done, you'll have a separate cabinet or shelf of food that you need to find a substitute for and also to try and use up before your endoscopy. I wish I would have done that first. I spent a lot of time doing research on foods that we don't even eat that often but I was just trying to wrap my brain around the whole thing.

I mourned . . . and it wasn't even me with the diagnosis. I mourned for the food that my daughter couldn't have (stuff that I love that she hadn't even developed a taste for ). I mourned for the change in our lifestyle - we rarely eat out now. I'm done mourning; it didn't last too long. But now I worry about how she will handle college and she's only six - it's always going to be something .

Even if your son tested negative before, he could test positive, now. Did he have any genetic testing done? If he has one of the celiac genes, then he is at risk for the rest of his life and should probably be screened every so often or if he starts having GI symptoms.

When I was a kid, I had an infected tooth. My mom gave me some kind of whiskey and had me swish it around in my mouth to numb it and then spit it out. I do remember that helping - and I was a good girl and didn't swallow it - but as an adult, swallowing the whiskey might help, too

[Virgie]

When I was a kid, I had an infected tooth. My mom gave me some kind of whiskey and had me swish it around in my mouth to numb it and then spit it out. I do remember that helping - and I was a good girl and didn't swallow it - but as an adult, swallowing the whiskey might help, too

Hehe My Mom had me do that too. I actually wouldn't mind a drink if it wasn't for the fact that the dentist put me on antibiotics and painkillers so I suppose that wouldn't be a good combination. Darn !!!

I have been trying to clean out my pantry some but that just makes everything seem so real, and then I do get anxious. I just wish the appt. & tests were over with. Her older brother keeps telling her how her throat is going to be sore after the scope and that is making her nervous now. Can't win.

Continuing to count down the days. 10 days left.

Virgie

[Nikki'smom]

I just wanted to add I feel the same way! Part of me wants to go through things and get rid of certain things and call the school etc. since her blood work was so positve the drs and nurses told me don't count on the biopsy being negative. So what I decided to do is when I pull something out of the cabinet I check ther ingredients so I know for when the time comes.

I also get the mourning procces so much! It took a few days but not I am actually ok with it and ready to move on with the next chapter of our lives.