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First Week Dealing With Celiac Disease


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7 replies to this topic

#1 MBMike

 
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Posted 27 December 2012 - 06:54 PM

Hello all,

First off, I'm new to message boards but was encouraged by my wife to join one for support so here I am. Three weeks ago my blood work was 98 and I'm anemic to boot. I was experiencing bloating, abdominal pain, headaches, nausea, fatigue.....just overall awful. I started a gluten free diet after I received the blood results and immediately started to feel better. I have since been diagnosed with Celiac (1 week ago today) after the results of my endoscopy were available. I've had issues for about 4-5 years but how I was treated by most GPs is a topic for another day.

My wife has been a fantastic support as our whole house has gone gluten free (toaster is gone, old frying pans, any condiments that could have been in contact...a clean sweep). As an aside, we're still waiting for my 3 children to receive their test results (9 year old girl, 7 year old boy and 3 year old boy).

My question is this....I immediately felt better but have since slid back to feeling lousy. I should clarify, the fatigue and nausea are back but the bloating and abdominal issues are much better. I've removed dairy as well and I'm following the recommended dietary supplements. Should I expect a continued roller coaster until my body has healed?

Mike
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#2 nvsmom

 
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Posted 27 December 2012 - 07:46 PM

That's great you are feeling better... mostly. For some, like myself, the first few weeks are tough because some go through a withdrawl of sorts; I remember being incredibly grumpy, tired, grumpy, very headachey, and grumpy. It wasn't fun... my family is lucky to have survived me. ;) Like you, during that time, my GI issues and migraines mostly resolved, but other symptoms took a while longer to improve. Others find that it can take a year for some issues to resolve themselves... this disease truly tests our patience.

Some discover other food intolerances that were less obvious while we were dealing with the gluten. Many celiacs have issues with lactose, and less commonly casein, as well as soy, corn, rice or even nightshade sensitivities. A food diary can be helpful to try and find out if any of these other foods are bothering you.

If some symptoms don't resolve, you might want to check yourself for other deficiencies. Many celiac are low in ferritin (as you know), B12, D, calcium and others. I'm afraid I don't know them all as i was lucky and escaped having other deficiencies. Also, many celiacs find they have thyroid problems which can cause some GI symptoms as well as the fatigue. For example, my fatigue and "C" did not improve at all until my thyroid was treated properly. If you need your thyroid checked, tests to request are TSH, free T4, free T3, TPO Ab.

Good luck! I hope you feel 100% soon. :)
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#3 GFinDC

 
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Posted 27 December 2012 - 09:31 PM

Hi Mike,

Welcome to the forum. :) Since you are new to forums be sure to watch out for those weird little yellow guys that pop up sometimes. They are always hanging around and smiling at people. Especially newbies! :D

One week is a start on gluten-free eating. But healing can take a while, months or years in some cases. The autoimmune process doesn't stop on a dime, so damage can continue for a while even after you have stopped eating gluten. And it can kick off again when you ingest even a small amount of gluten in the future. And that tends to happen pretty often for new people, as they learn to adjust their eating habits and not trust foods they had eaten safely in the past. Honestly it is just plain easy to forget about gluten sometimes when you are new to the diet. And gluten tends to be in many foods that people don't think of possibly containing gluten too. So it is easy to make mistakes.

Eating a whole foods diet is a good way to start out. Whole foods are things like whole vegetables, meats, fruits etc. Processed foods like breads, cookies, TV dinners etc are usually loaded with ingredients besides the main food and sometimes they are gluten containing ingredients. It can save a lot of time in the grocery store not buying the processed foods by not having to analyze those long ingredients lists. Processed foods also can contain food colorings and preservatives that some people react to. After a while eating whole foods you may start recognizing your bodies reactions to foods more clearly. When you eat 100's of food ingredients each week it can be confusing what is causing a problem. But when you simplify it to 20 or less foods it becomes more obvious.

So a simple whole foods diet can help in several ways. Anyhow, welcome to the forum again. Oh oh, watch out, I think I see a another yellow guy! :)
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 LauraB0927

 
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Posted 29 December 2012 - 05:32 PM

Welcome!!! If you read a lot of other posts on here you'll seem to find that most of us had a "roller coaster" period when we first started out being gluten free. It seems that our body needs to adjust to not having gluten in it and I know personally that I had brain fog, fatigue, stomach issues, and was pretty moody for a while. It seems that we truly have to learn the meaning of patience when diagnosed with Celiac because the healing process takes quite a while for some folks, depending on how significant your damage is. Some days you'll wake up feeling great, and other days completely lousy.

I agree with GFin (and he knows his stuff) to begin with a whole foods diet (meat, chicken, fish, veggies, fruits, nuts) until your gut heals more. I would also suggest to begin taking probiotics and digestive enzymes - they've helped me out a lot and I wish I had started them sooner. This is a great place for support and I agree with your wife that we often times do need that support when we start out going gluten free - this forum has been a lifesaver for me! Good luck and best wishes to you!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#5 MBMike

 
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Posted 30 December 2012 - 01:12 PM

I appreciate the input. From what I've read, it sounds as though going gluten free is easier today than it was even five years ago. Thanks all and I guess we'll talk soon!
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#6 GottaSki

 
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Posted 30 December 2012 - 02:46 PM

I missed the welcome wagon --

Hi MBMike!

Read a lot and ask questions - it really does make the transition much easier :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 squirmingitch

 
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Posted 30 December 2012 - 07:28 PM

Welcome to the board Mike! And you are a very lucky man to have such a smart wife who encouraged you to join a board for support. She is welcome here also if she ever has any questions or just needs to rant herself. You are a few steps ahead of the game with such a supportive family!

And as to your question ---- you have been given good advice. There will be ups & downs for anywhere from a few weeks to maybe a year. Only time will tell how long it will be in your case as we are all individuals & have individual reactions & healing times.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 GFinDC

 
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Posted 31 December 2012 - 09:06 AM

I appreciate the input. From what I've read, it sounds as though going gluten free is easier today than it was even five years ago. Thanks all and I guess we'll talk soon!


Cool beans Mike. Since you are new to message boards, you might like to try clicking the View New Content link on the top right of the main forum screen. That will give you a list of all the new thread postings so you can review what has been going on lately. I use Mozilla Firefox and so I can right click each thread and open it in a new browser tab. Makes it easy to go through the new posts quickly.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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