Newbie From Kalamazoo, Mi

[cardine45]

I thought I'd take today to introduce myself as I'm off work for prep for my colonoscopy tomorrow. I was first told by my doctor that he was almost positive I had celiac before even running any tests due to the array of symptoms I have. I know I should be asking more questions and getting more concrete answers from him, but the whole thing is so overwhelming and frustrating. I know from research that there are a variety of blood panels they can do, and I have no idea what ones he ran, but he said the tests came back negative. But he also said that he still thinks I have it, and he told me I could choose to go gluten free whenever I wanted. My Vitamin D and B12 levels were incredibly low, but he didn't test for hemoglobin/iron and had to draw more blood for it at my second appointment.

Sorry my thoughts aren't incredibly organized, I guess everything just hit me today because I haven't had time to sit down and think about it until now. I heard the doctor say the test came back negative, but he also said it was still likely that I have it, and it felt so good to have finally figured out what's wrong.

Now I want other people's advice, especially if they're from the Kalamazoo/Southwest Michigan area. My stomach issues started around the time I was in high school (I'm 26 now). I've always been scared to death being somewhere that I can't get to a bathroom quickly, especially if it's unfamiliar surroundings or if I'm driving on a road that I'm not familiar with where I can stop. My stomach issues pertain mainly to severe stomach cramping and chronic diarrea (recently up to 6-12 times per day). I recently started having breathing problems with a swelling of the throat feeling and severe tightening of the chest like someone was sitting on my chest. I also had a period of 2 weeks that I was getting severe chest pains under my left breast typically in the middle of the night. I could only breath shallowly and I couldn't move when I was having the chest pains. For a period of 4 months this winter, I constantly had a canker sore somewhere in my mouth, and I recently had one root canal done, and I'm waiting on 3 more with 4 more cavities to fill beyond that. I'm constantly tired, and I'm exhausted if I don't manage to get at least 10 hours of sleep each night. Lately if I try to walk my dogs the normal mile and a half walk that I take them on, my muscles in my legs will ache like I went on a 20 mile run for at least 3 or 4 days. Rarely do I have the energy to do that, so I'm not exactly in shape, but I don't think that that kind of pain is normal. My skin is also beyond dry, and if I don't want it constantly flaking off, I have to put on lotion at least twice a day. If I wear a black shirt, the inside is seriously almost completely white from the skin that came off throughout the day.

I have no idea if all of these symptoms are caused by celiac, though I've read the majority of them can be caused by celiac. I'd appreciate anyone's input on this.

I started the gluten free diet about 2 weeks ago, and I don't expect immediate results, and although I've referred to myself as feeling a million times better, I still have a long way to go to feel normal. Rather than running to the bathroom every single day multiple multiple times, I've been having more occasional bouts, typically on Mondays so far (2 weeks isn't much to go on though).

Ok, I think I'm done now. I need to get my dogs outside and run some errands before I start the colonoscopy prep at 3pm. I didn't ask a lot of questions about why I'm doing the colonoscopy, and I know normally they would do an endoscopy, but I feel better about making sure there aren't any other issues that they might be able to find. I also know they can't do a confirmatory diagnosis after you go gluten-free, and despite the negative blood panel, I wouldn't mind getting something concrete though I will continue gluten-free if it continues helping. (I already have a little more energy)

Ok, really done now. I needed that time to ramble.

[jrs1123]

HI!! I know you posted this a week ago but I figured it never hurts to respond late. I myself have recently been diagnosed with celiac and am in the MI area. Although you were looking for someone in SW I figured SE wasn't that far away:) Anyhow I don't have a ton of advice yet for you since I am new to much of this myself but I wanted to take the time out and say Hello:) I hoep the colonoscopy went well for you and you are feeling somewhat better at the least! If you'd like to chat just let me know.

[cardine45]

Thanks for the reply. I haven't gotten the results back yet, but they were able to tell me that they found and removed 7 polyps which don't look to be abnormal from what they could tell right away. They also could only get the scope in about half-way because there was an area that they described as very "tight" and they couldn't go any further. I have a barium swallow study (I think with a CT scan) for next Friday so they can see if there are any other areas like this and to see if they can figure out how big the area is and why it's constricted. I'm not looking forward to having another all-liquid diet day, but I guess I should get used to this because it sounds like I'll be having a lot more tests before this is over.

[islandbeez]

HI!! I know you posted this a week ago but I figured it never hurts to respond late. I myself have recently been diagnosed with celiac and am in the MI area. Although you were looking for someone in SW I figured SE wasn't that far away:) Anyhow I don't have a ton of advice yet for you since I am new to much of this myself but I wanted to take the time out and say Hello:) I hoep the colonoscopy went well for you and you are feeling somewhat better at the least! If you'd like to chat just let me know.

Hello fellow Michiganders

I've been lurking here for a few months and just decided to pop in on this post.

I'm recently diagnosed and live in southeast MI.

[Jenn928]

Hi all,

I thought I would pipe in as well, I was dx in dec-07 and still struggling with it. I live in MI also, west of the metro detroit area, livingston county area.

Nice to see other Michiganders.

[jen100]

Hello Kalamazoo!

Allegan mi here. I was surprised to see a Kalamazoo post. I was just on here asking for a good dr in west mi...I think I'm ready to find a gastro. I have a sister with celiac (living in Kalamazoo, with positive blood test - so she didn't pursue a gastro). I had negative bloodwork, but went gluten free as a test - and now I believe I can never go back I've had three different neg. reactions to glutens I ate on purpose and many reactions to glutens I only found out about after the fact ... like McDonalds fries.

How are you doing? The early stages of gluten-free living seem to be the most challenging and depressing.

Always happy to meet another gluten-free so close to home.

Jen

ps anyone else reading this from sw mi?

[whitball]

Welcome to our club! I am from Mid Michigan area. Hope that you are getting the help that you are seeking.

[dandelionmom]

Hi! Another Michigander here (metro Detroit but used to live in GR).

I could hardly believe all the conditions that cleared up when I went gluten-free (acne, wrist pain, back pain, headaches, insomnia, plus all the digestive issues).

[Meleficent]

I am a former Grand Rapidian now living in the Windy City. I do not know if you have found a doc yet, but my Grandmother is also a Celiac and her doc is one. if you want, I can get you the name, if you do not mind the drive to GR.

[don 2]

new myself 3 weeks been eating fruits, veggies and meat fish and chicken mainly. live in rochester mich. feel better already. had scope test 3 weeks ago and positive. wife has been helping me alot. get hungry at nite try few corn chips or fresh fruit. hope this helps you some.

[Lizz7711]

Now I want other people's advice, especially if they're from the Kalamazoo/Southwest Michigan area. My stomach issues started around the time I was in high school (I'm 26 now). I've always been scared to death being somewhere that I can't get to a bathroom quickly, especially if it's unfamiliar surroundings or if I'm driving on a road that I'm not familiar with where I can stop. My stomach issues pertain mainly to severe stomach cramping and chronic diarrea (recently up to 6-12 times per day). I recently started having breathing problems with a swelling of the throat feeling and severe tightening of the chest like someone was sitting on my chest. I also had a period of 2 weeks that I was getting severe chest pains under my left breast typically in the middle of the night. I could only breath shallowly and I couldn't move when I was having the chest pains. For a period of 4 months this winter, I constantly had a canker sore somewhere in my mouth, and I recently had one root canal done, and I'm waiting on 3 more with 4 more cavities to fill beyond that. I'm constantly tired, and I'm exhausted if I don't manage to get at least 10 hours of sleep each night. Lately if I try to walk my dogs the normal mile and a half walk that I take them on, my muscles in my legs will ache like I went on a 20 mile run for at least 3 or 4 days. Rarely do I have the energy to do that, so I'm not exactly in shape, but I don't think that that kind of pain is normal. My skin is also beyond dry, and if I don't want it constantly flaking off, I have to put on lotion at least twice a day. If I wear a black shirt, the inside is seriously almost completely white from the skin that came off throughout the day.

I have no idea if all of these symptoms are caused by celiac, though I've read the majority of them can be caused by celiac. I'd appreciate anyone's input on this.

Hi, i'm from Ann Arbor...just diagnosed last November along with my 9 year old daughter. We got tested through enterolab.com stool testing, both gluten and dairy/soy sensitive. I have the celiac gene, she has two gluten sensitive genes. I then got my blood tested which was also positive. For me, I did not have many digestive issues or malabsorption problems, but more autoimmune...hypothyroidism and adrenal fatigue. Actually, adrenal fatigue can happen due to the gluten problem, and many of your muscle and fatigue issues sound adrenal to me. I went on cortef which is a physiologic dose of cortisol before I knew I was celiac, and the relief of symptoms related to fatigue and irritability was AMAZING. Also since going dairy and soy free, all of my joint pain went away. Most people with gluten problems also have problems with dairy and soy...the proteins are just hard to digest, and if you have a leaky gut, you will have many food sensitivities until you are healed somewhat...so you might want to try eliminating all 3 for a few months and see if your recovery isn't a bit quicker doing that. Then you could introduce the soy or dairy and see how you do. I've been off both for almost a year now...and i'm now able to have small amounts of dairy without any reaction. Soy seems to lead to extreme irritability still.

Also, be careful about the root canals and fillings...there is a large group of dentists that are against root canals but i've never had any so i'm not clear on all the rationale...and of course you do not want any mercury/silver fillings put in your mouth...but if they are taking out mercury fillings, it should be done SAFELY using specific protocols that most dentists do not do. Look up IAOMT (iaomt dot org)on the internet..it is the international academy of oral medicine and toxicology and has alot of good information about these issues...then there is a website for a michigan dentist who practices these safe techniques (he's not the only one, but has good info on the website)...it is ryanschroederdds dot com

Be patient and give it some time...you will soon be feeling much better as your body heals from the constant "poisons" it's been used to getting eliminated. Good luck!

[Lizz7711]

Now I want other people's advice, especially if they're from the Kalamazoo/Southwest Michigan area. My stomach issues started around the time I was in high school (I'm 26 now). I've always been scared to death being somewhere that I can't get to a bathroom quickly, especially if it's unfamiliar surroundings or if I'm driving on a road that I'm not familiar with where I can stop. My stomach issues pertain mainly to severe stomach cramping and chronic diarrea (recently up to 6-12 times per day). I recently started having breathing problems with a swelling of the throat feeling and severe tightening of the chest like someone was sitting on my chest. I also had a period of 2 weeks that I was getting severe chest pains under my left breast typically in the middle of the night. I could only breath shallowly and I couldn't move when I was having the chest pains. For a period of 4 months this winter, I constantly had a canker sore somewhere in my mouth, and I recently had one root canal done, and I'm waiting on 3 more with 4 more cavities to fill beyond that. I'm constantly tired, and I'm exhausted if I don't manage to get at least 10 hours of sleep each night. Lately if I try to walk my dogs the normal mile and a half walk that I take them on, my muscles in my legs will ache like I went on a 20 mile run for at least 3 or 4 days. Rarely do I have the energy to do that, so I'm not exactly in shape, but I don't think that that kind of pain is normal. My skin is also beyond dry, and if I don't want it constantly flaking off, I have to put on lotion at least twice a day. If I wear a black shirt, the inside is seriously almost completely white from the skin that came off throughout the day.

I have no idea if all of these symptoms are caused by celiac, though I've read the majority of them can be caused by celiac. I'd appreciate anyone's input on this.

Hi, i'm from Ann Arbor...just diagnosed last November along with my 9 year old daughter. We got tested through enterolab.com stool testing, both gluten and dairy/soy sensitive. I have the celiac gene, she has two gluten sensitive genes. I then got my blood tested which was also positive. For me, I did not have many digestive issues or malabsorption problems, but more autoimmune...hypothyroidism and adrenal fatigue. Actually, adrenal fatigue can happen due to the gluten problem, and many of your muscle and fatigue issues sound adrenal to me. I went on cortef which is a physiologic dose of cortisol before I knew I was celiac, and the relief of symptoms related to fatigue and irritability was AMAZING. Also since going dairy and soy free, all of my joint pain went away. Most people with gluten problems also have problems with dairy and soy...the proteins are just hard to digest, and if you have a leaky gut, you will have many food sensitivities until you are healed somewhat...so you might want to try eliminating all 3 for a few months and see if your recovery isn't a bit quicker doing that. Then you could introduce the soy or dairy and see how you do. I've been off both for almost a year now...and i'm now able to have small amounts of dairy without any reaction. Soy seems to lead to extreme irritability still.

Also, be careful about the root canals and fillings...there is a large group of dentists that are against root canals but i've never had any so i'm not clear on all the rationale...and of course you do not want any mercury/silver fillings put in your mouth...but if they are taking out mercury fillings, it should be done SAFELY using specific protocols that most dentists do not do. Look up IAOMT (iaomt dot org)on the internet..it is the international academy of oral medicine and toxicology and has alot of good information about these issues...then there is a website for a michigan dentist who practices these safe techniques (he's not the only one, but has good info on the website)...it is ryanschroederdds dot com

Be patient and give it some time...you will soon be feeling much better as your body heals from the constant "poisons" it's been used to getting eliminated. Good luck!

[GlutenGuy36]

I am from Clawson, Michigan. I am a 36 year old male. I was feeling awful since October of 07 then Dianosed with Celiac Disease July 14th of 2008. I was told for the longest time that it was just anxiety and here take some anxiety/depression meds and you'll be all better.

Needless to say that wasn't the case at all. I continued get worse. Major abdominal pains, super tired, muscle/joint pain, tingling in my extremeties, brain fog you name it I have it.

I was diagnosed by blood test. I had the colonoscpy and endoscopy and results were inconclusive for celiac but showed inflammation throughout the digestinal tract.

I have been on the Gluten Free diet since the day I was diagnosed. I feel better as far as my abdominal pains are concerned. I still feel achy throughout my body and tired ans some days just not right at all.

I know I could of developed other food allergies too. Possible Candida ( yeast ) outbreak. All of these things you have to consider. It all seems so overwhelming at times.

[StrongerToday]

Hi.. I'm from Ann Arbor too! Just wanted to say hi! I've been doing this for 3.5 years now, it gets so much easier and it is SO worth it!

The Ann Arbor group is having a gluten free meal at a local restaurant in June, if you're interseted in hearing more abut Ann Arbor's events be sure to join our local group "glutenfreeannabor" on Yahoo.

[freeda]

ps anyone else reading this from sw mi?

I'm in Portage.

[Ali6952]

Hello fellow Michiganders. I am living up North and was recently diagnosed with Celiac. I am only one week into it and cannot believe the results I have seen. Normally I would go to the bathroom 5-8 times a day and now I'm going 1-2! I'm a 33yr old woman and am just on here looking to see what's available for celiacs, etc.

Ali

[KazooMama]

Good morning! I come to this site once in a while when looking up some information. Today I registered since I saw this post from Kalamazoo. I am from Kalamazoo area as well. I do not have Celiac but 2 of my 3 children do. I wanted to let you know there IS a support group here in the Kalamazoo area! We meet on the 2nd Tue of every month at Bronson Hospital in Kalamazoo. They are a national charter of the Celiac Sprue Association and a great bunch. Also, we use a gastro doctor who is very very good. Only problem, is that she is good--that means long waits for an appointment. Often for new patients it can be 3 months! Her name is Heidi Gjersoe:

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Hope some of this helps all of those that are living in SW Michigan!