13 replies to this topic

[mela14]

I was diagnosed with gluten intolerance about a month ago have gone gluten-free with the exception of a few slips. My gut is still having a rough time and I am seeing a dietician to help me with my daily dietary challenges. I am still experiencing GI problems, headaches, muscle pain and fatigue whenever accidentally ingesting gluten. I've also discovered other intolerances and have been trying to avoid them as well. The other thing that I am having a rough time with is medications. I have found that a lot of medications cause my symptoms to flare up! Some will actually cause fatigue, heart palpatations, muscle pain, bowel pain or intestinal irritation and headaches. It's almost like a full blown allergy attack. My dr said the gluten caused a leaky gut and other things are more problematic. In taking some of the medications...the muscle pain is so bad that I actually feel toxic! Ive' checked the labels on these meds and they are on the safe drug list for gluten. I'm worried that these intolerances to meds will never go away and that they are making the intestinal problem worse. As soon as things calm down....if I need to take a med the whole thing flares up again! I am avoiding all meds as much as I can but there are times when a migraine kicks in that I just have to. Has anyone else had these problems with being so sensitive and what else can I do for the leaky gut? For me, I am just not healing fast enough. Could it be anything else?
Thanks,
Mel

[Canadian Karen]

Hi!

I noticed that you were incorrectly diagnosed with endometriosis. I also was diagnosed with endometriosis in my early 20's, and have had two laparoscopies. I was told I would have a 50/50 chance of every being able to conceive a child. I am now 42, and have four children, including twins!!!! Don't listen to everything the dr. tells you!!

I have read an article that there is a link between endometriosis and celiac disease. I can't remember what link the article was in, but I will search again for it. I did find it interesting though. So perhaps you actually do have endo AND celiac.....

Regarding medications, I also have a problem tolerating many medications. Any type of anti-inflammatory drug instantly attacks my intestines and it is cramping and pain until I stop them. I do tolerate Tylenol okay though....

Hope you see an improvement soon!

Karen

[mela14]

Karen,

Thanks for the quick reply. Unfortunately, I had a total hysterectomy 2 years ago. I wish I would have waited but the pain from the adhesions was sooooo bad. They said I probably had adenomyosis too but the pathology reports for ALL my sugeries was negative for endo. When they did one of my first laps they accidentally severed an artery which was the beginning of all the adhesion problems. I saw a new gyn last week , who feels along with others that I never had endo...it was probably gluten intolerance all along especially since most of my symptoms were abdominal distention and pain. When I point to where the pain is he says that it's intestinal and bowel. hmmmm Of course this made me very upset...but I am trying to move forward in spite of all the disappointments. So I am back to square one with abdominal pain, bloating etc. At least now I know to avoid the gluten and it is helping but there are so many other things that are setting me back. The imitrex I took last night destroyed me intestinally as well as physcially. My entire body is aching and and feels flu like. I feel like I was hit by a mack truck! I need to rest. Maybe tomorrow will be a better day.
Will my "leaky gut" ever get better? What can I do to help it along??? Is there something esle I should be doing or some other test I should have.
Thanks for you input,
mel

[stef_the_kicking_cuty]

Hi Mel,

i went gluten-free in July 2004 and I had the first day (in between) without pain in my intestines in October and the first week (almost) in November. Since that it's getting better slowly. The pain free periods get bigger. But when i started it was so bad, that the pain in my intestines was so big, that it felt like the skin was scratched of from the inside and a knive was sticking in there or somebody shot me or something like that. And i had a strange feeling like pulsation or so inside or like something is dripping. Really scary. Well, slow but sure it went better but i lived gluten-free for about 3 - 4 month to feel the first improvement.

Stef

[mela14]

Thanks Stef....
I have to just keep doing what I am doing and hope that with time things will heal and get better. What other choice do we have? there have been times that my gut just felt saw raw!!! yesterday was one of those days.....meds don't sit well with me.
OK.... gotta stay focused! thanks for the positive feedback.

[flagbabyds]

Even if the medications are on the gluten-free list, call them because they may have cross-contamination and that could be making you sick

[mela14]

How would I go about getting that information? I tried to call one of the drug companies regarding another medication and got nowhere. I called the pharmacy and they were not very helpful. Actually they were upset...but in the end they faxed me the ingredients for the meds(imitrex and xanax) .....it looked ok... So at this point I have to go with the way that I feel when I take them.
I'll never take xanax again! there is something in there that makes me sooo sick!Imitrex makes me sick too but when your head is exploding and it's going on a day or so of a killer migraine...you'll take anything. gotta find something else that works for me without all those nasty side effects........now...trying to get a dr to work with me on this is another story.

[stef_the_kicking_cuty]

Hi Mel,

I had one of those killer migraines last tuesday. I'm not good in takeing medicine either. But I took tylenol and I was fine. I even could hold class. Awesome!!!

Stef

[lisa922]

Mel and Karen -

That is very interesting about a possible link between endo and Celiac. I had my first lap in 2001 and then a lap in July 2003 for destruction of endo and my uterus-only was removed in Sept 2003. My uterus was enlarged and adenomyosis was suspected, but not verified in pathology. Mel - I am very curious to hear if your worst abdominal pains went along with your cycle or were they all the time? I still have my ovaries and I really feel like Celiac is messing with me somehow still hormonally. It's very confusing and amazing how these gyn issues and Celiac issues seem to go together. I was not diagnosed with Celiac until April 2004. Sometimes I wish I would not have had the uterus removed because it makes me wonder if it would have corrected itself once going gluten-free, but what's done is done. I do also have a great deal of relief from the female pains, so I am thankful for that. I'm hoping the endo won't grow back, but I know it is a risk still having the ovaries in there. Karen - I'd love to see that info about the endo/Celiac connection if you can find it. Thanks

[lisa922]

Mel - silly me... I forgot to mention that I also have trouble with meds. I've been gluten-free for 7 months and I still can't take vitamins. So far, I have done fine with the antibiotic I've had to take recently for strep, but I'm still terrified to try either Advil or Tylenol or anything else!!! I was originally mis-diagnosed with Advil-induced gastritis, then gallbladder disease, so I am really paranoid!! I hope you get some relief soon so you can take your meds.

[FreyaUSA]

I've been using Maxalt for my migraines and haven't noticed any bad reactions yet (but since I usually get my migraines from accidentally ingesting gluten, I might not notice any further reaction if there is some in the meds...)

Gak...I'm beginning to get that overwhelmed feeling again.

[stef_the_kicking_cuty]

I think that gluten and gyn problems are related, too. Because before I went gluten-free I had so much pain with my monthly problem that I couldn't even get out of bed sometimes. Now it's completely gone, not the slightest pain anymore. I think it's awesome and I never would have drawn any connection between that and eating gluten before.

Stef

[mela14]

I had abdominal pain and distention all the time. The way it was explained to me was that there were little islands of endo that flared up here and there. i did have heavy and painful periods so I guess that's why they thought endo.Also about 10 years ago I had an ovarian cyst that ruptured..(that was torture)..they said that some endo could have implanted itself. anyway, i agreed to a lap and once they went in they severed my epigastric artery. that was the start of adhesion related problems. I finally had a total hysterectomy 2 years ago and everything was stuck together...bowel,uterus,bladder etc... With the hysterctomy..the female problems of cysts and heavy painful periods were gone but the GI problems continued. No one gave me an answer..I searched myself and now it is making sense..correcting it is another story and will take time. I can't undo what was done....but in reviewing all my pathology reports .... they were all negative for endo. the uterus was neg for adenomyosis. Some very prominent doctors that went in to remove the adhesions all said..."no endo"..this was before and after the hysterectomy... so we can't say it was just because I didn't have estrogen..
I believe that the distention and pain was all GI...from gluten intolerance or other intolerances. I had some very traumatic things in my life which could have brought it out. A really bad car accident in Mexico for one...Getting the bends scuba diving...getting some kind of bug while traveling....there are so many other things too..oh and finally a really bad virus(Parvo) that just changed my whole immunity.
Hoe this give you a better picture of my GYN/GI nightmare.

[darlindeb25]

i do have something that may help with the migraines----i use peppermint oil or lotion---peppermint is very cooling and relaxing too--my mom says to put peppermint oil under your eyes--i know the scent is very relaxing and seems to clear your head--when i am having a allergic reaction to someones perfume, i always put peppermint lotion on my face and it realy helps--i had a store manager once tell me that when she has a migriane she always uses Dr. Bronner's Peppermint Soap to wash her hair and it helps--you can buy it at most health food stores and krogers are carrying it now in my area--its wonderful----peppermint is also great on sunburn-----i burn peppermint candles all the time too---try it--it may just help--anytime i can use something that is not medication, i try-----as for vitamins, lisa--i have that problem too--i can take a daily--i take Nature Made Womens +50 and i do fine, but i cant take any additional supplements or my tummy goes ballistic-----deb