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Getting Ready For The Gi Visit
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Hi all :) This is my first post after using this site countless times for research. On one of my visits to celiac.com someone suggested writing down everything to give to your doctor at an appointment, so that you don't forget important info. I have a GI doctor's appointment next week, and the following is what I was going to give him. Please share your thoughts, whether I sound like I indeed have celiac or gluten intolerance, and if I should add or take out anything. There are so many factors, but my biggest complaint is the constant bloating and constipation. Be warned...I put everything out there in this letter :lol: It is lengthy, but I appreciate any feedback you can give :rolleyes:

Primary Concern: Do I have celiac or gluten intolerance?

Background: Lost fifty pounds in six months in 2010 through healthy diet and exercise change. During this lifestyle change, I began eating a lot more whole grain and whole-wheat products than ever before. During December 2010, I suffered a severe sinus and ear infection. Since the infection, my body has not been cooperating.

Symptoms:

Main Symptom: Constantly dealing with extreme bloating, gas and constipation, which were not a problem before the infection. Even if I am able to go, I often feel as though my bowels aren’t completely empty.

-I eat plenty of fiber and drink between 60-100 oz. of water everyday. The standard line of “increase your fiber and drink more water” brings me no relief, and actually creates more intestinal distress with increased gas.

-I have tried every laxative in the hopes to keep me regular. My GP recommended Miralax to me as safe for long-term use. Miralax is ineffective for me and creates even more bloating and gas with no relief. I have to take 5 Dulcolax to get minimal relief, and in the past I have drunk a whole bottle of magnesium citrate hoping for relief and nothing happened. A whole bottle and nothing! The only thing that seems to give me any kind of relief are high doses of highly absorbable magnesium supplements. I eat plenty of magnesium rich foods (almonds, avocados, bananas), so I am wondering why my body is so lacking in magnesium? (After researching, I discovered celiac and gluten intolerance can lead to the malabsorption of magnesium.)

Other Symptoms: Recurring angular cheilitis (contact dermatitis), which was finally determined to be caused from my silver French horn mouthpiece. When asking my GP why I only developed contact dermatitis on my lips, he said it was from the moisture while performing. However, now I also have developed an allergy to other silver items such as jewelry, which creates a rash and redness on my skin. I had played for years on a silver mouthpiece with no problem. Since my bouts with angular cheilitis, I have switched to a gold plated mouthpiece with no problems.

-Can sleep for 8 hours and still wake-up feeling completely exhausted

-Have suffered from bouts of extreme joint pain (right hip especially), rib pain, back pain, headaches

-Heartburn

-My iron level when giving blood was 13.0

-Eye and toe twitching

-I was diagnosed with depression by my GP in October 2011 and took Wellbutrin until February 2012.

-In March 2012, I developed a severe allergy to a cavity filling material that had been used on my teeth before. My dentist said that although it’s very rare, people can have allergies to materials, but he found it very strange that I had developed one to a product he had used before. He replaced the filling with another company’s product and it has been doing much better, but I notice the gums are still somewhat swollen, but when I’ve experimented giving up gluten, the swelling and inflammation go away.

-Stomach and intestinal gurgling/popping

-I have extremely dry chapped hands that bleed if I don’t constantly reapply lotion in the winter

-If I eat a lot of gluten I can “gain” 5 pounds overnight

-Absent or inconsistent menstrual cycles. *See additional information

*Additional information: I began taking Yaz in October 2009 was switched to the generic Gianvi in January 2011 and then back to Yaz in July 2011, and discontinued its use in December of 2011. This was the second time I have stopped taking a BC pill and the first time my period came back with no problem. When I ended Yaz in December 2011, I went 5 months without a period. My OB/GYN requested blood tests, which I have attached, and everything came back normal with the exception of very low estrogen, which research says can be affected by gluten intolerance. I took 20mg of Provera and finally had my first period in May 2012! In has been somewhat sporadic since May, and I completely skipped my period in October.

For me, constipation takes a huge hit on my energy level, and when I am constipated and bloated, I don’t exercise as frequently, which is why I have gained some weight back. Also when dealing with my depression, I also enjoyed a fair amount of sweets which temporarily elevated my mood, but it wasn’t until my gluten-free experimentation that I discovered my bloating, mood, joint pain, twitching, chapped hands, exhaustion, etc. all improved. After talking with a friend who has been diagnosed with gluten intolerance, he suggested I make an appointment with a GI specialist. All this time I was under the assumption that all celiacs and gluten intolerant people are thin with diarrhea, but now I’ve come to realize through my research that many are constipated and overweight. Also through research, I’ve learned that for many, an infection causes their celiac and gluten intolerance to surface.

I’m tired of trying products and medicines in the hopes they give me some normalcy. When I lost the weight before getting my infection, it was the best I’ve ever felt, and I want to return to having that great sense of wellbeing!

Test requested: Pill Cam endoscopy

*Forum Members: Any feedback is much appreciated :)

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Have you had any doctor run a celiac blood panel set of tests yet, as the GI doc will not do the endoscopy without that. And the doctor may not do "pill cam" but the other kind of searching with a flexible tube, light, and camera.

Secondly, on a tangent, the artificial hormones in the progestins in birth control pills can make women seriously depressed. Just a FYI. And these ob-gyns will never admit to it, just keep switching you around again and again to different brands. Natural progesterone does not do this.

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Hi all :) This is my first post after using this site countless times for research. On one of my visits to celiac.com someone suggested writing down everything to give to your doctor at an appointment, so that you don't forget important info. I have a GI doctor's appointment next week, and the following is what I was going to give him. Please share your thoughts, whether I sound like I indeed have celiac or gluten intolerance, and if I should add or take out anything. There are so many factors, but my biggest complaint is the constant bloating and constipation. Be warned...I put everything out there in this letter :lol: It is lengthy, but I appreciate any feedback you can give :rolleyes:

Primary Concern: Do I have celiac or gluten intolerance?

Background: Lost fifty pounds in six months in 2010 through healthy diet and exercise change. During this lifestyle change, I began eating a lot more whole grain and whole-wheat products than ever before. During December 2010, I suffered a severe sinus and ear infection. Since the infection, my body has not been cooperating.

Symptoms:

Main Symptom: Constantly dealing with extreme bloating, gas and constipation, which were not a problem before the infection. Even if I am able to go, I often feel as though my bowels aren’t completely empty.

-I eat plenty of fiber and drink between 60-100 oz. of water everyday. The standard line of “increase your fiber and drink more water” brings me no relief, and actually creates more intestinal distress with increased gas.

-I have tried every laxative in the hopes to keep me regular. My GP recommended Miralax to me as safe for long-term use. Miralax is ineffective for me and creates even more bloating and gas with no relief. I have to take 5 Dulcolax to get minimal relief, and in the past I have drunk a whole bottle of magnesium citrate hoping for relief and nothing happened. A whole bottle and nothing! The only thing that seems to give me any kind of relief are high doses of highly absorbable magnesium supplements. I eat plenty of magnesium rich foods (almonds, avocados, bananas), so I am wondering why my body is so lacking in magnesium? (After researching, I discovered celiac and gluten intolerance can lead to the malabsorption of magnesium.)

Other Symptoms: Recurring angular cheilitis (contact dermatitis), which was finally determined to be caused from my silver French horn mouthpiece. When asking my GP why I only developed contact dermatitis on my lips, he said it was from the moisture while performing. However, now I also have developed an allergy to other silver items such as jewelry, which creates a rash and redness on my skin. I had played for years on a silver mouthpiece with no problem. Since my bouts with angular cheilitis, I have switched to a gold plated mouthpiece with no problems.

-Can sleep for 8 hours and still wake-up feeling completely exhausted

-Have suffered from bouts of extreme joint pain (right hip especially), rib pain, back pain, headaches

-Heartburn

-My iron level when giving blood was 13.0

-Eye and toe twitching

-I was diagnosed with depression by my GP in October 2011 and took Wellbutrin until February 2012.

-In March 2012, I developed a severe allergy to a cavity filling material that had been used on my teeth before. My dentist said that although it’s very rare, people can have allergies to materials, but he found it very strange that I had developed one to a product he had used before. He replaced the filling with another company’s product and it has been doing much better, but I notice the gums are still somewhat swollen, but when I’ve experimented giving up gluten, the swelling and inflammation go away.

-Stomach and intestinal gurgling/popping

-I have extremely dry chapped hands that bleed if I don’t constantly reapply lotion in the winter

-If I eat a lot of gluten I can “gain” 5 pounds overnight

-Absent or inconsistent menstrual cycles. *See additional information

*Additional information: I began taking Yaz in October 2009 was switched to the generic Gianvi in January 2011 and then back to Yaz in July 2011, and discontinued its use in December of 2011. This was the second time I have stopped taking a BC pill and the first time my period came back with no problem. When I ended Yaz in December 2011, I went 5 months without a period. My OB/GYN requested blood tests, which I have attached, and everything came back normal with the exception of very low estrogen, which research says can be affected by gluten intolerance. I took 20mg of Provera and finally had my first period in May 2012! In has been somewhat sporadic since May, and I completely skipped my period in October.

For me, constipation takes a huge hit on my energy level, and when I am constipated and bloated, I don’t exercise as frequently, which is why I have gained some weight back. Also when dealing with my depression, I also enjoyed a fair amount of sweets which temporarily elevated my mood, but it wasn’t until my gluten-free experimentation that I discovered my bloating, mood, joint pain, twitching, chapped hands, exhaustion, etc. all improved. After talking with a friend who has been diagnosed with gluten intolerance, he suggested I make an appointment with a GI specialist. All this time I was under the assumption that all celiacs and gluten intolerant people are thin with diarrhea, but now I’ve come to realize through my research that many are constipated and overweight. Also through research, I’ve learned that for many, an infection causes their celiac and gluten intolerance to surface.

I’m tired of trying products and medicines in the hopes they give me some normalcy. When I lost the weight before getting my infection, it was the best I’ve ever felt, and I want to return to having that great sense of wellbeing!

Test requested: Pill Cam endoscopy

*Forum Members: Any feedback is much appreciated :)

To continue on from Takala's advice, if and when you get to see the GI, I can promise you he is not going to read what you wrote :wacko: You had best prepare what you want him to see in bullet form, so that he can scan his eyes over it and pick out the salient points. Remember that his goal is to spend as little time with you as possible, so omit all unnecessary words. I have bolded what I consider to be the salient points. If you put these in to a bullet type document to give to him, then you can verbally expand on them as necessary. I agree that you need to have the blood testing before going to the GI because that will be his first question - what were your test results?

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thanks so much for the feedback! Mushroom-I will shorten my note to the doc. I have a history of adding too much detail :)

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I agree with the others that short bullets is the way to go.

I would also give brief examples like "bloating in the upper abdomen so belly distends over belt line" or extreme jont pain in my left hip that makes coming down stairs difficult". Examples can help if you have a doctor who listens.

I was going to mention the BC too. That can cause problems in many autoimmune disorders like Hashimoto's (which about 1/10 celiacs have) or lupus. It's not far fetctched that it would affect celiacs badly too.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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