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Many Questions On Symptoms
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4 posts in this topic

Hi all, I am so glad to have found this site!

I have lots of questions regarding Celiac Disease. One of my doctors thinks that I have celiac, but I have some weird symptoms...

1) about 2 years ago I started having loose stools (floating, going more than 2 times a day). I have seen on the board and beyond that this is common with Celiacs. I always thought it was because I was a vegetarian for 15 years. So, I went off gluten (or thought I did, but was eating spelt) for a few weeks, then completely gluten-free for 3 more weeks, and that symptom has improved. Good deal.

2) 10 Months ago I got sick. Not too sure what got me. My prostate gland became infected/inflamed. As a fellow of 34 years old, very active, this is not all that common. It took 3 months before a UR actually checked the prostate (a story in itself!). Along with the pain came horrible sharp pains in my lower left and right abdomen (I see that celiacs get this) and frequent urination. I noticed through searching this site that some celiacs have had issues with bladder and urogenital problems, and they were directly related to the celiac disease. Has anyone out there had problems with the prostate gland due to celiacs? Since going gluten-free I have seen improvement in the symptoms, but it also has been a long time since those symptoms started, so I am unsure whether going gluten-free has helped or if it is due to all the time that has passed.

3) About 5 months (and after 1.5 months of antibiotics) of the prostate and abdominal pains (so bad that I could barely walk or lift more than 2 pounds!!), I began to experience severe pain in the left sacroiliac joint, that extended down to the bottom of my left foot. I was told by a doc to take 800mg of IB 4 times a day, which I did for about 2 months (lessened the dosage as time continued). Since the SI pain kicked in in June, the pain has subsided some, helped along by swimming and walking, and maybe going gluten-free! I see that some of you have experienced SI/Tailbone pain just like me. Since I am not sure whether I have celiac disease or not, I am wondering how common it is to have the pains with celiac disease.

4) I have been gluten-free for over 3 weeks (3weeks before that I was only taking in gluten via spelt), and then I got my blood tested for celiac disease. Is it true that if I was already gluten-free then it would throw off the test, resulting in a false negative?

5) When I origionally got sick, I lost a lot of weight, around 20 pounds. Has anyone else lost this much? I was skinny to begin with, so... the hematologist that I have seen (just a few days ago) said that there may be a few things going on, such as an anemia (which can happen with celiac disease), but I didn't show to be having celiac disease with the blood results that were taken before I went to see him. But I do have lots of celiac disease symptoms. The results of his blood tests are due in 2 weeks.

6) skin rash on left ankle. was there for 8 years, only in summer or warm weather. last month, after the first visit with the clinical ecologist, i was told to get off gluten and use lamisil. the rash went away after 1.5 weeks. anyone else have this rash?

So what this all boils down to is: I have seen 13 Doctors now. My UR claims that my prostate is normal size now (was only inflamed on the left side). He believes that my condition is caused by an intolerance to a food or 2. I am in the process of figuring that out now. But since he is unsure, I am seeking advice on symptoms from anyone else who has celiac disease. My symptoms have all started to get better since I have been gluten-free. But celiac disease is still up in the air.

I had a CT scan in March that revealed nothing. MRI of Lumbar (not pelvis, the insurance company would not approve) revealed nothing as well (aside from a bulding disc).

I know that some autoimmune conditions can cause nerve inflammation, so I am wondering if it is possible that my SI pain/prostate pain is a result of nerve inflammation caused by untreated Celiac Disease.

Wow, that was a lot, but I needed to get it all out at once. I apologize for such a winded post that contains several questions, but I have the feeling I will learn more from the posters here than I can from my doctors, who seem to be going in circles.

Thanks very much in advance!!

John

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Hi John and welcome to the site!! As a female I can't answer all of your questions, but you have diagnosed yourself via the diet challenge as celiac disease, or at least you for sure have problems with gluten. I haven't had any of the bloodwork or biopsies or anything else done - my gp put me on the gluten-free diet nine years ago for bad bad bad diarrhea, and that stopped that problems so the dx from him was celiac disease. It's called the diet challenge and is a viable dx tool. Since you have been gluten-free, it will skew the results and probably give a false negative.

Your symptoms are consistant with celiac disease. celiac disease is also a malabsorption disease, so the body will have other problems besides digestive. It's the malabsorption of fats that causes the floating, frothy stinky D. Nerve problems are a biggie, so it that overwhelming fatigue that I liken to swimming upstream in a molasses river in Jan. Then there's the depression and irritability along with the other stuff for good measure. I hope this helps some, and feel free to ask any questions here. None too weird or silly!

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4)  I have been gluten-free for over 3 weeks (3weeks before that I was only taking in gluten via spelt), and then I got my blood tested for celiac disease.  Is it true that if I was already gluten-free then it would throw off the test, resulting in a false negative?

Some of us always show up negative on blood tests, even when consuming. I was tested repeatedly for over 5 years and never showed up.

6) skin rash on left ankle.  was there for 8 years, only in summer or warm weather.  last month, after the first visit with the clinical ecologist, i was told to get off gluten and use lamisil.  the rash went away after 1.5 weeks.  anyone else have this rash?

Sounds like you got a positive diagnosis of DH here, that doc was smart and gave good advice.

I know that some autoimmune conditions can cause nerve inflammation, so I am wondering if it is possible that my SI pain/prostate pain is a result of nerve inflammation caused by untreated Celiac Disease.

That is very possible.

Wow, that was a lot, but I needed to get it all out at once.  I apologize for such a winded post that contains several questions, but I have the feeling I will learn more from the posters here than I can from my doctors, who seem to be going in circles.

I hope you get relief soon. Get back on the gluten-free bandwagon.

<{POST_SNAPBACK}>

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Hi John--All of our stories are similiar and different at the same time. We all seem to have secondary problems because of the gluten. I have neuropathy and carpal tunnel in my arms and small fiber neuropathy in my legs due to malabsorption. I was the celiac that gained weight--my body fought to survive by adding weight--I lost 60# when I went gluten-free. I suffered chemical embalances, panic attacks, agoraphobia--you name it and now--I dont take anything for panic and its very rare that I have any panic. Somethings never go away--I am still claustrophobic--I developed new intolerances--very limited on soy and corn. Feel free to email me. Deb

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    • Congratuations!   You and 30% of the population carries the genes to potentially develop celiac disease.  A gene test just excludes celiac disease but can not diagnose it.   Have you been on a gluten free diet?  Is that why you were not able to take the standard celiac blood test?  
    • Back to Dr. Google for you!   A histamine intolerance is not a true IGE mediated allergic reaction.  Read up!  It does often (like many intolerances) occur with celiac disease because the small intestine is damaged.  It can resolve once the gut has healed.   celiac disease antibodies can take time to build up (in your blood stream for the test or skin).   That's why the gluten challenge is 8 to 12 weeks.  In the case of DH, you can eat something and days or weeks later, the DH rash will appear and you'll go crazy trying to figure out when you got "glutened" (but don't take any serious gluten advice from me because I don't have it).   You can have several things wrong with you and a wheat allergy and celiac disease can occur at the same time.  Add on something like Mast Cell Activation, Autoimmune Hives, Histamine Intolerance.......the list can be endless (at least that is how some of us feel.)  Of course your high school could be making you ill.  Think of all that stress!  Who knows what lurks in your building, but let's face it, you ate some gluten.  Best of luck to you on your challenge!  
    • Hi, I need help understanding these results please. Can anyone help me.  DQ2.5 (HLA1*05 DQB1*0201 AND OTHER NON-RISK ALLELES CATEGORY# 4 DQ GENOTYPE: DQ2 HETEROZYGEOUS INCREASED RISK: 10X RELATIVE RISK: HIGH My doctor is out on vacation from now until the end of August and I couldn't get an appointment until the end of September.  
    • Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 
    • Thanks for the comments. With Dr. Google, I have seen mast cell disorder pop up.  It seems like I need to eliminate some basics before heading in that direction. So, another question...is it possible that symptoms of celiac need time to "build up" over time? For instance,  I started reintroducing gluten and coffee last week to prepare for my GI appt.  However, nothing really seemed to happen except a little knee crankyness (which I can easily attribute to hiking).  Yet, yesterday I had a huge bagel at work, had itchy forearms, and then had two huge hives appear later.  Today, I had another bagel and in a few hours I had a few red fingers that were itchy and numb feeling in the tips.   I know histamine intolerance is a possibility, but wouldn't that show up as an extremely large hive with my allergy skin test? Also, I had to go into work today and yesterday. I'm wondering if that environment could contribute to the issue (I'm a high school teacher).  
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