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New Here And Totally Overwhelmed

Rhonda-R

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Rhonda-R Newbie
Rhonda-R
Posted

For the past 6 years my family's life has been consumed with learning about Crohn's disease. My son was diagnosed at age 11 and he's had a terrible time with it. I was diagnosed with Ulcerative Colitis 2 years after his diagnosis, but I ignored my problems to deal with his. I really didn't have the energy to give to my own issues and so, I simply pushed myself through.

In November my son was in the hospital for 3 weeks. During that time we met a physician that we bonded with right away. He told us that he wished he could follow us at his integrative medicine practice, but he has a 2 year waiting list. After seeing my son and chatting with us many times during my son's stay we found we meshed well and were sad we wouldn't be able to continue to see him. The day prior to my son's release the doc talked to the other physicians on his staff and convinced them to fit both of us in right away.

My doctor ordered so many tests I thought I'd be anemic from the blood work. One of the tests she ordered was a Celiac Disease Panel. I'd never considered that I may have Celiac Disease. I'd been on the SCD diet for over 6 months when I had the test done. I didn't eat any grains prior to the test and I still had 20 U/mL of Gliadin AB IGA in my blood. My IGA Serum fell within normal limits and the Tissue Transglutaminase AB IGA fell in the negative range, but my doctor still told me to stay away from gluten. She said that the antibodies have a crazy half life and take a long time to work out of our system. Does anyone know if the other levels were low because I hadn't ingested gluten in over 6 months?

My B12 levels were very low, as were my vit. D so I'm taking injections every other day for the B12 and supplements for the vit. D. My thyroid isn't working, my adrenals aren't working... lol, I'm a mess.

My son's blood work will be back any day now, and I'm worried that he will also have the burden of Celiac disease on top of his Crohn's disease. His food allergy tests came back and he's already allergic to many nuts, soy, corn, etc.. the list is long. I'd like to find foods away from the SCD that he can eat so he can gain a few pounds. At 6 foot tall, 130 pounds is mighty skinny.

After spending 6 years with Crohn's I feel like I know sooo much about that disease and here I am, starting at square one with something new. It's just so overwhelming I'm frightened that I'll fail and get worse. I'm tired as tired gets, sick of being sick and just barely able to hope. Any help, direction, etc would be appreciated. I did order the Dummies book.

Thanks

Rhonda

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ravenwoodglass Mentor
ravenwoodglass
Posted

It is overwhelming at first. The good news is that with a diagnosis of UC you may find that the gluten free diet helps you bring that undercontrol or even into remission. It may also help with your son's Chrons. No matter what his test results do give the diet a good try for you both. You have come to a good place for support and info. Read as much as you can here and ask any questions that you need to. I am really glad for you that you seem to have found a good celiac savvy doctor. It may make a big difference in your health and quality of like.

Jestgar Rising Star
Jestgar
Posted

It will get easier. Just start as best you can with reading labels, and realize that before too long it will no longer be so awkward and time consuming.

It really will be fine.

Wolicki Enthusiast
Wolicki
Posted

It does get easier. Take a deep breath, and read lots of labels and threads on this site. If you have questions, someone here has an answer, almost always. Try to stick with whole, unprocessed foods- proteins, fruits and veggies. It is hard to digest many things while your intestines are healing. You should definitely give up dairy for a while. it is also common to have reactions to potatoes, tomatoes, eggplant and peppers, corn, soy, nuts and eggs. It's best to stay away from these until you have healed. Simple meals with few ingredients is the way to go.

It may also help to take daily probiotics and enzymes with meals until your gut is healed. Be sure to check the labels on your prescription meds, toothpastes, anything that will go into your mouth. Try to eat foods that you have prepared, because the risk of cross contamination is great at restaurants, or meals prepared by well meaning loved ones.

There's definitely a learning curve, so read, read read! When in doubt, don't take a chance, call the company.

Rhonda-R Newbie
Rhonda-R
Posted
  • Author

Thanks for your replies. After 6 months eating SCD I've become accustomed to eating a pretty simple diet. We're taking good probiotics and L-glutamine. It was interesting reading Ravenwoodglass's tag lines. I've been diagnosed with so many things, or should I say misdiagnosed. Although I have had dermatitis herpetiformis covering my arms and legs, it was a doctor that saw me after they had disappeared who finally did a Celiac Panel on me. I'm just surprised that so many of my health issues may have started from Celiac Disease and I hope that learning to eat gluten free will help turn some of it around. I'm not sure I want the early menopause to reverse itself.. I really don't want to go through that again. I'll have to read through the board's forums to see how many people have stories like I do. I'll not be surprised to be one of many.

At the moment I'm trying to figure out how stringent I need to be about cross contamination, gluten in my shampoos/lotions, etc...

Thanks again for the replies,

Rhonda

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your replies. After 6 months eating SCD I've become accustomed to eating a pretty simple diet. We're taking good probiotics and L-glutamine. It was interesting reading Ravenwoodglass's tag lines. I've been diagnosed with so many things, or should I say misdiagnosed. Although I have had dermatitis herpetiformis covering my arms and legs, it was a doctor that saw me after they had disappeared who finally did a Celiac Panel on me. I'm just surprised that so many of my health issues may have started from Celiac Disease and I hope that learning to eat gluten free will help turn some of it around. I'm not sure I want the early menopause to reverse itself.. I really don't want to go through that again. I'll have to read through the board's forums to see how many people have stories like I do. I'll not be surprised to be one of many.

At the moment I'm trying to figure out how stringent I need to be about cross contamination, gluten in my shampoos/lotions, etc...

Thanks again for the replies,

Rhonda

I would be as strict as you can at first. Many of us have issues with shampoos and lotions that have gluten ingredients and CC from the manufactoring process or from crumbs and such in our homes and restaurants. Celiac is an autoimmune reaction. Our bodies create antibodies and those antibodies are reactivated with a surprisingly small amount of gluten.

My OB/GYN told me my periods might start again, celiac had driven me into a very early menopause, and I felt the same way you do. Now however I wish it had started again. Even though it would have been a pain to deal with again.

mommida Enthusiast
mommida
Posted

If you weren't eating gluten before your testing it will throw off the results.

It sounds like the doctor just wants you to get better as quickly as possible. The gluten free diet can help with the Chrons.

The diet gets easier with time. Every one here has experience to help you through. Keep a food journal to keep track of hidden gluten or other food intolerances.

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LDJofDenver Apprentice
LDJofDenver
Posted

It can be a little overwhelming at first. We

Rhonda-R Newbie
Rhonda-R
Posted
  • Author

Thanks for the links, I'm looking them over and doing quite a bit of reading. I'm still overwhelmed, but I'm tackling it. LOL, it's not like I can give up or stop eating!

I'm lucky to have a Gluten-Free store an hour from our home... everything in the store is gluten-free and my son and I giggle and race from item to item checking for soy and corn (his allergies.) I've been chatting up my local grocery and they have a 7 page list of Gluten-free products they carry now. They're in the process of listing the items by isle, personally I'd love them in their own area!

My son's tests came up negative for Celiac, but he's been following the SCD diet for 6 months, so we really don't know. What I do know is that when we removed the grains from his diet all of his stomach pain, diarrhea, etc. disappeared and his once totally ulcerated colon started healing. To me, that's really enough evidence. I don't want to start feeding him wheat and have him suffer just to get a formal diagnosis.

Are there blood tests available for Celiac Disease that don't require gluten consumption? I remember reading about a DNA test. I guess I can google that next. All of this research is keeping me from my housework... darn it! *grin*

~Rhonda

GFinDC Veteran
GFinDC
Posted

You can get a genetic test done but it doesn't prove that you have celiac. Many people have the celiac genes but don't have the disease (autoimmune reaction) The reaction to the diet seems pretty clear though.

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