I Thought I Had It Figured Out....maybe Not

[jessicalw28]

So, as some of you know, I have been struggling with my symptoms for the last 6 or 7 months. They are mainly chronic hives and loose stools. I have had tons of tests done including allergies, celiac blood panel and biopsies; all of which were inconclusive. I have several chronic symptoms as well, which often go along with celiac/gluten intolerance like lactose intolerance, anxiety, eczema, lactose intolerance, GERD, keratosis pilaris, irregular periods, etc. One of the blood tests showed an autoimmune reaction, but the docs don't seem to know which one. I did not receive a pathology result back from the GI doc, just a phone call with the receptionist saying "your results were negative. Have a nice day." My immunologist suggested I get the report to make sure there wasn't very minor damage that they failed to mention. I guess the only testing left would be Enterolab stool testing and genetic testing.

So right now the immunologist wants me to stay on the 3 meds he's prescribed: allegra, hydroxyzine, and zantac for the hives. He says they are probably chronic idiopathic urticaria, which basically means "you have hives but we don't know what they are from, so you can just take antihistamines for the rest of your life."

The GI doc did the endoscopy and never said anything about a follow up appt. He prescribed Levbid for IBS. It has helped lessen the frequency of the loose stools (2-3 times per day to 1 time per day), but they are still soft, bulky, smelly and have undigested food in them. Sometimes I can also see the tiny beads from inside one of my medicine capsules. Sounds like malabsorption to me.

Psychiatrist thinks I have IBS and that my increased anxiety is causing my hives. Yes, I have been known to have physical anxiety symptoms like muscle tension and nausea, but I do not remember being any more anxious than usual. Well, definitely more anxious once the hives started, but not before.

So where I'm at now...I've been gluten free for about 6 weeks and dairy free for the most part. I think my energy level is better. I haven't felt the need to take as many naps. My hives are only in small amounts. Instead of being totally covered in them from head to toe, I usually have none to just a few small clusters. They are also less itchy than before. My stools are as I mentioned above, still too soft and not normal for me. I also occasionally still get embarassing, rotten-egg smelling gas (1-3 times a week).

So pretty much none of my doctors think that I have celiac or gluten intolerance and don't seem to want to listen when I ask about it. It is hard to tell if the hives truly are better because of my gluten-free diet or just because I am on antihistamines. Should I try eating some gluten on purpose to see if I react, or try going off my antihistamines?

My mom also brought a new issue up today. She thinks there could be a link to my anti-anxiety medication. I have been taking Effexor XR in various dose levels since 2002. Usually, my only side effects are that my hands are a little shaky and I get dizzy if I don't take it at the same time every day. She thinks that my body may have just gotten fed-up with it. Hives and diarrhea are listed as side effects, but I guess I'm just wondering if it is odd that they would show up all of a sudden after 8-9 years of taking it. I know it has a pretty bad reputation for side effects and withdrawal, but it has been a wonder drug for me. (however, I'm hoping if I am gluten intolerant, my anxiety will improve and maybe I won't need meds!)

Sorry everyone for going on and on, but I am so frustrated right now! Any help would be greatly appreciated.

I would love to do the Enterolab test, but it's pretty expensive. Being on 7 meds and going to all these doctor's appts, even with insurance, is not cheap.

[Dixiebell]

Hi.

It has only been six weeks. I feel you need more time gluten-free before you think you are not GI.

I was able to wean off my anti-depressants ( do this with a Dr.) by being gluten-free, taking fish oil (1000mg a day), B-complex with C, vit D 3000-5000iu a day and a multi. It took a few months for the anxiety and depression to lift, but it did.

About the hives and D, I have heard that you can wake up one day and be allergic to something you were not before. It is very possible it is your meds. I myself would give up all dairy for a while and see if that helps, you can always add it back later down the road. I keep reading here about soy. You might want to get rid of that for a time too.

I had hives last week (four days), trying to figure out why, I will get them 1-3 times a year.

Has your Dr. done any stool testing for parasites or malabsorbtion? If not you might want to do that to rule anything in or out.

Did you get the results from your endo?

[cassP]

wowww... im so sorry you've got so many annoying issues & unanswered questions... but know that many of us can relate to you here.

like said above- i really hope you can get off the Effexor (but weaning and under the care of a doc)... i truly think these pschiatric drugs may be more harmful than good. be careful tho- ive heard that Withdrawal from Effexor can be a B*tch. my best friend told me- so i always refused it- and tried Paxil instead- which im off now too. you're probably gonna find that after a significant time being gluten free & fixing your malabsorption & vitamin levels- you're going to be much happier & less stressed. and yes- probably less allergic-> i have also read that the more stressed we get- the more our body gets flooded with Histamines.

ive gotta rush to work, wanna write more- but hoping the best for you- and you have to know that you are at the very least: Gluten Intolerant.

good luck!!!

[jessicalw28]

Thanks guys. I am scheduling an appointment to see if the psychiatrist will help me switch to another anxiety med. I'll keep doing the gluten-free diet and cut out dairy completely. Ugh...so frustrated!

[jessicalw28]

Hi.

It has only been six weeks. I feel you need more time gluten-free before you think you are not GI.

I was able to wean off my anti-depressants ( do this with a Dr.) by being gluten-free, taking fish oil (1000mg a day), B-complex with C, vit D 3000-5000iu a day and a multi. It took a few months for the anxiety and depression to lift, but it did.

About the hives and D, I have heard that you can wake up one day and be allergic to something you were not before. It is very possible it is your meds. I myself would give up all dairy for a while and see if that helps, you can always add it back later down the road. I keep reading here about soy. You might want to get rid of that for a time too.

I had hives last week (four days), trying to figure out why, I will get them 1-3 times a year.

Has your Dr. done any stool testing for parasites or malabsorbtion? If not you might want to do that to rule anything in or out.

Did you get the results from your endo?

No, I have not had any stool testing done, just blood. I asked the immunologist about it yesterday and he said I should go back to the GI specialist. I will try to schedule a follow up with them soon. I also need to get the specific patho results from them. They sent me the initial report from the procedure with the pictures, but that didn't show anything abnormal. The immunologist said that it is possible to have hives in the GI tract that may be causing diarrhea. Interesting.

[Happyw5]

I have been having chronic hives for a while my self. My allergist tested me for high antibodies to my thyroid, and mine our high. He said that the chronic hives could be from that. Have you ever had your thyroid antibodies checked? I have only been gluten free for a week, and I am starting to feel much better. I have many other allergies, but I have been noticing that my anxiety seems to get very high when I eat popcorn, always comes back negative for an allergy test though. I am not sure yet, but for a while I am going to try to keep that out of my diet as much as I can, just to see!

[jessicalw28]

I have been having chronic hives for a while my self. My allergist tested me for high antibodies to my thyroid, and mine our high. He said that the chronic hives could be from that. Have you ever had your thyroid antibodies checked? I have only been gluten free for a week, and I am starting to feel much better. I have many other allergies, but I have been noticing that my anxiety seems to get very high when I eat popcorn, always comes back negative for an allergy test though. I am not sure yet, but for a while I am going to try to keep that out of my diet as much as I can, just to see!

Thanks for the suggestion, but yes I have had my thyroid checked. Everything is normal. The more I read people's comments online, the more I think the Effexor has been causing these problems and may have affected my immune system.

[GFinDC]

Open Original Shared Link

Just for the heck of it, you might want o read about other people's reactions to Effexor on the Ask A Patient site. I didn't see anything about hives but there many pages of comments and 2 listings.

And here is a picture of hives at the Mayo Clinic site:

Beware nekked skin with hives!

Open Original Shared Link

Have you checked into Dermatitis Herpetiformis? It is a skin condition only celiacs get and might be what you are calling hives:

* Celiac Disease and Gluten-Free Forum (Home) * > Celiac Disease and Gluten-Free Forum * > Dermatitis Herpetiformis

[jessicalw28]

Open Original Shared Link

Just for the heck of it, you might want o read about other people's reactions to Effexor on the Ask A Patient site. I didn't see anything about hives but there many pages of comments and 2 listings.

And here is a picture of hives at the Mayo Clinic site:

Beware nekked skin with hives!

Open Original Shared Link

Have you checked into Dermatitis Herpetiformis? It is a skin condition only celiacs get and might be what you are calling hives:

* Celiac Disease and Gluten-Free Forum (Home) * > Celiac Disease and Gluten-Free Forum * > Dermatitis Herpetiformis

Yeah. Thanks. I went through the 20 something pages of comments earlier today and there are a few people who reported hives after several months use.

I have seen a dermatologist and an allergist/immunologist and they both say hives, but I have not have them biopsied for DH. I was told they were not DH because there were no open sores, oozing or pain. They are bumps and welts that move around, but don't seem to resemble any pictures of DH. They look more like the hives picture you posted.

[jessicalw28]

I just remembered something that might be a clue. About a month ago, after already beginning the gluten-free diet, I caught a viral stomach illness. I was vomiting for about 2 days. During those two days was the first time I had not had any hives in 6 months. Then immediately after I got well, they came back very severe for a couple days, then gradually faded. While I was sick I was unable to take any of my medications. Could it be that I didn't break out because the effexor was not in my system? Then, when I could keep it down the hives came back...

[GFinDC]

I just remembered something that might be a clue. About a month ago, after already beginning the gluten-free diet, I caught a viral stomach illness. I was vomiting for about 2 days. During those two days was the first time I had not had any hives in 6 months. Then immediately after I got well, they came back very severe for a couple days, then gradually faded. While I was sick I was unable to take any of my medications. Could it be that I didn't break out because the effexor was not in my system? Then, when I could keep it down the hives came back...

Effexor sure sounds like a possibility. People can develop reactions to just about anything. It could be a reaction to some ingredient in the Effexor pills also. Drug makers use fillers to "bulk" out the pills, but the active ingredients are usually a small percentage of the pill weight. So most of what you are taking in pill form is not a drug but some kind of filler to make the shape of the pill, laced with a little of the actual drug.

Drug makers aren't required to disclose the fillers they use in their pills, and it can vary by manufacturer too. So it might lead you to finding a food intolerance you didn't know about. Say the filler in your pills is corn starch, that might mean you should avoid corn.

[frieze]

inre: rotten esmell .....Open Original Shared Link

[gf-soph]

I just remembered something that might be a clue. About a month ago, after already beginning the gluten-free diet, I caught a viral stomach illness. I was vomiting for about 2 days. During those two days was the first time I had not had any hives in 6 months. Then immediately after I got well, they came back very severe for a couple days, then gradually faded. While I was sick I was unable to take any of my medications. Could it be that I didn't break out because the effexor was not in my system? Then, when I could keep it down the hives came back...

It certainly sounds plausible.

I just wanted to lend my voice to the caution about coming off effexor. My mum was on it and followed her psychiatrist's instructions for how to withdraw safely, but she had a severe reaction anyway. It was like a mini psychotic episode, lasting a couple of days. I'm not suggesting that's a common experience, but just to make sure that the people around you know when you change your medication, and to keep an eye on you and have a backup plan.

[cassP]

It certainly sounds plausible.

I just wanted to lend my voice to the caution about coming off effexor. My mum was on it and followed her psychiatrist's instructions for how to withdraw safely, but she had a severe reaction anyway. It was like a mini psychotic episode, lasting a couple of days. I'm not suggesting that's a common experience, but just to make sure that the people around you know when you change your medication, and to keep an eye on you and have a backup plan.

yes be careful!! that's why i refused effexor in the past- because my best friend had such a bad withdrawal period coming off it.

[Judy3]

So, as some of you know, I have been struggling with my symptoms for the last 6 or 7 months. They are mainly chronic hives and loose stools. I have had tons of tests done including allergies, celiac blood panel and biopsies; all of which were inconclusive. I have several chronic symptoms as well, which often go along with celiac/gluten intolerance like lactose intolerance, anxiety, eczema, lactose intolerance, GERD, keratosis pilaris, irregular periods, etc. One of the blood tests showed an autoimmune reaction, but the docs don't seem to know which one. I did not receive a pathology result back from the GI doc, just a phone call with the receptionist saying "your results were negative. Have a nice day." My immunologist suggested I get the report to make sure there wasn't very minor damage that they failed to mention. I guess the only testing left would be Enterolab stool testing and genetic testing.

So right now the immunologist wants me to stay on the 3 meds he's prescribed: allegra, hydroxyzine, and zantac for the hives. He says they are probably chronic idiopathic urticaria, which basically means "you have hives but we don't know what they are from, so you can just take antihistamines for the rest of your life."

The GI doc did the endoscopy and never said anything about a follow up appt. He prescribed Levbid for IBS. It has helped lessen the frequency of the loose stools (2-3 times per day to 1 time per day), but they are still soft, bulky, smelly and have undigested food in them. Sometimes I can also see the tiny beads from inside one of my medicine capsules. Sounds like malabsorption to me.

Psychiatrist thinks I have IBS and that my increased anxiety is causing my hives. Yes, I have been known to have physical anxiety symptoms like muscle tension and nausea, but I do not remember being any more anxious than usual. Well, definitely more anxious once the hives started, but not before.

So where I'm at now...I've been gluten free for about 6 weeks and dairy free for the most part. I think my energy level is better. I haven't felt the need to take as many naps. My hives are only in small amounts. Instead of being totally covered in them from head to toe, I usually have none to just a few small clusters. They are also less itchy than before. My stools are as I mentioned above, still too soft and not normal for me. I also occasionally still get embarassing, rotten-egg smelling gas (1-3 times a week).

So pretty much none of my doctors think that I have celiac or gluten intolerance and don't seem to want to listen when I ask about it. It is hard to tell if the hives truly are better because of my gluten-free diet or just because I am on antihistamines. Should I try eating some gluten on purpose to see if I react, or try going off my antihistamines?

My mom also brought a new issue up today. She thinks there could be a link to my anti-anxiety medication. I have been taking Effexor XR in various dose levels since 2002. Usually, my only side effects are that my hands are a little shaky and I get dizzy if I don't take it at the same time every day. She thinks that my body may have just gotten fed-up with it. Hives and diarrhea are listed as side effects, but I guess I'm just wondering if it is odd that they would show up all of a sudden after 8-9 years of taking it. I know it has a pretty bad reputation for side effects and withdrawal, but it has been a wonder drug for me. (however, I'm hoping if I am gluten intolerant, my anxiety will improve and maybe I won't need meds!)

Sorry everyone for going on and on, but I am so frustrated right now! Any help would be greatly appreciated.

I would love to do the Enterolab test, but it's pretty expensive. Being on 7 meds and going to all these doctor's appts, even with insurance, is not cheap.

Your descriptions (most of it) sound like me before going gluten free. I don't have the anxiety issues but all the rest sounds very familiar. I am only 2 1/2 months gluten free so I still sometimes have the stools you mention but not every day anymore. It's getting better every day. Personally, I think you should try longer and see if it starts getting better. If it doesn't you can always go back to gluten.

Give it a fair shake though before you give up. Aren't doctors fun? I am lucky to have good one's that didn't blow me off but still took 2 years to figure it out.

Hang in there