Pursuing A Diagnosis

[LeAnne8790]

Hello all. I'm new to the board and am just now coming around to the idea that I may have issues with gluten intolerance or celiac. I'm interested in hearing other's experience. I made an appointment with a local GI doc recommended on this site this morning.

I never really considered that celiac disease could have been a problem since I've actually been overweight most of my adult life. I always thought that celiacs were thin and frail. I see now that it not necessarily the case.

As far as my "symptoms" go, I've long suffered from depression, and fatigue. GI-wise, I have had issues with diarreah - especially after eating fatty foods. At my highest weight I was 283 pounds, and "self diagnosed" with PCOS and after following a low-carb diet, I lost 120 pounds and felt pretty awesome - except my diarreah worsened. I attributed that to the higher fat and lower fiber aspects of the diet. After my weight loss stopped, I finally saw an endocrinologist and got the diagnosis of PCOS and she put me on metformin and phentermine and I lost back to my lowest weight, but then started to go up again. The diarreah with the metformin was too much and I was constantly going off and on the meds. Over the years, I have had unexplained issues with my liver enzymes going high and then normalizing again. I've been off the metformin for several months now and I'm still having the diarreah, so I'm not sure the metformin was ever to blame. Most days I have a bowel movement after I eat and its usually very watery. Gas is a big problem when I eat any carbohydrate, as well as shortness of breath. I suffer greatly from hypoglycemia if I'm not keeping the carbs very low. My abdomen will distend greatly and sometimes I will actually look 6 months pregnant, and by the morning, it will go down to normal.

I'm looking forward to hearing about other's experiences and if anyone has similar issues (i.e PCOS, overweight AND gluten intolerance) and if I get a diagnosis, learning how to manage this. I'm half hopeful I'll be diagnosed because it would explain so much.

[LeAnne8790]

Well, I'll reply to myself here if for no other reason than to journal. I'm not feeling well tonight and I'm wondering if it is because I'm allowing myself to have wheat right now in anticipation of my appt. with the GI doc. I'm retaining water like crazy. Yesterday, I had "d" and today - nothing at all, even though a few times I felt like I needed to go...but no luck.

I'm feeling very tired and lethargic. I have muscle pains and I feel like I've gained 30 pounds overnight. Some of this, and the water retention, may be related to the heat as well. But, I'm miserable. I've also been very emotional. I wish my appt. would hurry up and get here so I can at least get some relief. I need to rule this out if nothing else.

[tom]

. ... I'm half hopeful I'll be diagnosed because it would explain so much.

A common feeling around here.

Hope you're feeling better than last post. Alternating D & C is also common, pre-gluten-free.

How long until the GI appt?

Hope it's not too brutal to be eating gluten until then.

Have you been reading thru other relevant threads here? (I thought it very peculiar you got no replies - I don't think that happens often here & hope you haven't taken it personally)

good luck

[Darn210]

Hi LeAnne,

Welcome to the board. Good luck with your search for answers.

Just wanted to tell you that in order for your testing to be accurate, you need to keep eating gluten untill ALL your testing is done . . . including the endoscopy.

In the meantime, you can start researching your brands and start clearing out (using up) some of your pantry items (like certain salad dressings, packaged rice or potato products, etc) that have gluten in them and replace them with gluten free versions (while still eating regular bread/pasta/crackers/what-have-you). Try out a gluten free item here and there to figure out what you like ahead of time.

[LeAnne8790]

Thanks for the responses. I just now saw them!

I had my appt. with the GI doc today. I found his name on this site and I have to agree, he seems to be a good doctor and very knowledgable and supportive of issues relating to celiac disease.

I did think it odd that the didn't even bother with the blood test. We have the endoscopy a week from Friday. Yes, Tom, I have found that I feel terrible eating wheat products and I really wish I could have the endoscope sooner. I want to know because one way or another - diagnosis or not, wheat does NOT agree with me.

Here's where I am with symptoms right now. I'm retaining water like crazy. I'm putting on weight rapidly as well. That could be due, in part, because i'm not being "good" on my overall diet in anticipation of the restrictiveness that may come if I'm diagnosed. My bowel symptoms alternate between a day with nothing and a day with nothing but diarrheah. I did have a "normal" movement today though. I don't know if it has to to consistently be abnormal or not. I feel so incredibly tired and bloated, and I'm short of breath. I can't get enough sleep. I'm weepy and emotional (although I do have a lot of stress in life as well) and I'm starting to have issues with acid reflux (a new one for me). My BP was high as well, which is very unusual for me.

This doctor also is very big on looking at the "complete" patient, so he's also recommending I have a sleep study done (sleep apnea) and he says that I'm also the poster child for gall stones, so I'm having an ultrasound of my gallblader this Friday. He is also doing a colonoscopy when they do the endoscopy. He says he also wants to rule out some form of colitis. I'm not sure what form that is... I have no bleeding or reason to believe I have an infection.

I hope I can hang in there with the gluten? What is the minimum I can get by with prior to testing? Or do I have to gluten-up? Any advice about the procdure? What to expect? How to prepare? He did give me lots of material to read through, but I was thinking someone here might have some sort of "if I could do one thing differently" or "the best advice I got was..." type thing.

Thanks!

[grainfree]

Hi LeAnne8790,

I also am new to the board here. I have an appointment today with GP. On Friday night I had another episode of "crashing" about 9 pm and I had a pasta dinner before that. It had happened so many times that I knew something was wrong. I haven't been feeling all that great in the last few months and most of June everything I ate either came right out or would not come out. After Friday I started thinking celiac disease because of all the symptoms. I am happy that you are seeking treatment. I agree with you about wanting a diagnosis to be able to know exactly what the problem is. At least then its identified and can be remedied. Thanks for posting and I wish you the best for Friday.

Grainfree

[LeAnne8790]

Ugh...I have to tell you guys I feel just awful. I hope it is the wheat because if it isn't, I don't know what I will be able to "do" to make this better.

I'm completely, totally exhausted. Today I had a gallbladder ultrasound. I should have the results of that by Tuesday. I went and ate afterwards because I was hungry and had not had anything to eat because of the test. I thought I might go to out and do a little shopping, but as I ate (and yes, there was wheat involved) and I started to feel so bad that all I wanted to do was go home and lay down. I went to bed at noon and didn't get up til 4:00 p.m. Now I feel like a complete slug.

Went to my GP yesterday because of my BP and he put me on meds. I've been reading some posts on here that indicate there could be a connection to BP and celiac.

My endscopy is Friday. I'm actually looking forward to doing the fat flush diet after that.

[ang1e0251]

Hi LeAnne8790,

I also am new to the board here. I have an appointment today with GP. On Friday night I had another episode of "crashing" about 9 pm and I had a pasta dinner before that. It had happened so many times that I knew something was wrong. I haven't been feeling all that great in the last few months and most of June everything I ate either came right out or would not come out. After Friday I started thinking celiac disease because of all the symptoms. I am happy that you are seeking treatment. I agree with you about wanting a diagnosis to be able to know exactly what the problem is. At least then its identified and can be remedied. Thanks for posting and I wish you the best for Friday.

Grainfree

I hope you get the dx you want. Just don't be discouraged if your testing comes out negative. If that happens, you could still have a problem with gluten. I think all of us started out wanting a clear dx of our disease. The problem is that there is still a lot of unknowns about celiac disease and the testing is far from perfect. Just be openminded when your test results come in. Post them here and you can get another opinion.

[LeAnne8790]

Thanks. Regardless of the dx, I will definitely be removing gluten from my diet as I can honestly say that I did not start feeling this bad until I started eating it. I was low carbing it for the most part, which meant my intake of gluten was far less than it is now. Since I've been consciously eating more, my symptoms have overwhelmed me. If its NOT celiac, I don't know what it could be. But, I'm of the belief that if something makes you feel bad - don't do it.

I have another new development, which I think might be dermatitis herpetiformis. I have a rash on both my upper thighs that seems to be growing. It is not as bad as some of the pictures I've seen, but it certainly is itchy and seems to have the same characteristics.

This time next week, I'll be off gluten one way or another.

I was talking to my dad and his mom died of colon cancer. He said she had all kinds of digestive ills all her life. Who knows...maybe it was undiagnosed celiac.

[LeAnne8790]

Tomorrow is my egd and colonoscopy. I did hear back from the doc's office today on the gallbladder ultrasound and did come back positive for gallstones. I couldn't glean any other info from the nurse except that there were stones located near the neck of the gallbladder. She told me he intends to discuss the results and treatment plan with me when he sees me tomorrow.

I'm on clear liquids today, so no more gluten. I feel like crap. Headache, nausea, etc... I'm drinking fluilds to stay hydrated and at 5:00 I start the prep. Oh JOY! I have D this morning anyway....may have to camp out in the bathroom and move the TV in there. LOL

[ravenwoodglass]

Tomorrow is my egd and colonoscopy. I did hear back from the doc's office today on the gallbladder ultrasound and did come back positive for gallstones. I couldn't glean any other info from the nurse except that there were stones located near the neck of the gallbladder. She told me he intends to discuss the results and treatment plan with me when he sees me tomorrow.

I'm on clear liquids today, so no more gluten. I feel like crap. Headache, nausea, etc... I'm drinking fluilds to stay hydrated and at 5:00 I start the prep. Oh JOY! I have D this morning anyway....may have to camp out in the bathroom and move the TV in there. LOL

Yep put the TV in there and maybe even a comfy chair. The prep isn't fun but soon everything will be done and you will be on the road to healing.

[LeAnne8790]

Made it through the procedure ok. Doc said he got lots of biopsies of my small and large intenstines. He said he should have the results on Monday. He said everything looked good to the naked eye; however. He did find some diverticulosis though.

He said I'm definitely having problems with sleep apnea, and that my oxygen levels dropped so much during the procedure they had to hold my head and push my jaw forward so I could breathe properly. Good thing I have an appt. with the sleep doc this week.

He also said my gallbladder was full of stones and needs to come out. So, I will be setting that up soon. Seems I also read that gallbladder issues and celiac can be related as well.

So, I won't have to wait long for news.

[LeAnne8790]

The results are in.....and .... I'm still waiting for answers.

The doctor told me the results would be in by this afternoon, but I couldn't wait so I called. The office staff said the results are back, but the doctor has not given the sign off on them yet, so the office staff said they will have to call me back.

The suspense is killing me. LOL

[LeAnne8790]

The results are in and I'm negative. Negative for celiac, negative for h pylori, and negative for colitis.

Perhaps my gallbladder is to blame and that would make sense. I do think I had a reaction to the wheat in my diet. I may have been reacting to the carbs more than the wheat. Whatever the case, it is still back to low carb for me because I just feel better. I am thankful that I don't have to be diligent about gluten in my diet on top of everything else.

So, I guess that's the end of the road for me in this thread and on this board.Thanks to those who took the time to comment and offer support. Good luck and good health to you all.

[ravenwoodglass]

The results are in and I'm negative. Negative for celiac, negative for h pylori, and negative for colitis.

Perhaps my gallbladder is to blame and that would make sense. I do think I had a reaction to the wheat in my diet. I may have been reacting to the carbs more than the wheat. Whatever the case, it is still back to low carb for me because I just feel better. I am thankful that I don't have to be diligent about gluten in my diet on top of everything else.

So, I guess that's the end of the road for me in this thread and on this board.Thanks to those who took the time to comment and offer support. Good luck and good health to you all.

Please make sure that you give the diet a try especially since you do think you have a reaction to wheat. There are many instances of false negatives in both blood and biopsy, for many different reasons. Being diligent about gluten just might help the other issues you are dealing with.

[nasalady]

The results are in and I'm negative. Negative for celiac, negative for h pylori, and negative for colitis.

Perhaps my gallbladder is to blame and that would make sense. I do think I had a reaction to the wheat in my diet. I may have been reacting to the carbs more than the wheat. Whatever the case, it is still back to low carb for me because I just feel better. I am thankful that I don't have to be diligent about gluten in my diet on top of everything else.

So, I guess that's the end of the road for me in this thread and on this board.Thanks to those who took the time to comment and offer support. Good luck and good health to you all.

Many of us tested negative yet subsequently found that we DO have either celiac or gluten-intolerance. My granddaughter Carly was negative in bloodwork and first biopsy, yet had a positive biopsy a year later. Her doctor was smart enough to keep testing even though Carly has none of the known genetic markers for celiac.

Listen to your body.

Good luck with everything,

JoAnn