Something's Very Wrong

[Live2BWell]

Hello Board, I am new here, this is my first post. I am a 28 year old female, and I believe I might have celiac disease. I say that with a grain of salt, because after having suffered with a smorgasboard of health problems, I'm not sure what I have (and I'm not confident the doctors know either.)

Where do I begin? Well, I suppose I'll start from the present - and work my way back a bit

Most recently, I have been diagnosed with Hashimotos Thyroiditis, after bloodwork revealed antibodies and my thyroid ultrasound was pretty conclusive. I have been on a combination of Synthroid and Cytomel for several months, and we've been playing the yo-yo game with my doseages. In other words, I am not feeling better and my body is probably much more confused than ever. I had been diagnosed with insulin resistance in May of 2006, and have been on Metformin for that (and I am wondering if the insulin resistance isn't a result of the other medical problems, and once those are cleared up, the insulin insulin resistance would go away.)

I have had many GI problems, and have a post history with h-pylori; I also have a lengthy past history with Anorexia & Bulimia. While I have been recovered for several years, it's hard to say what is a result of the damage I have done to my body, and what isn't. What is "normal" and what isn't. I have been diagnosed with IBS, and I have also been diagnosed with GERD and Dysphagia (I am currently waiting the results of a recent esophogeal motility test.)

My GI issues seemed to go hand in hand with the seemingly endless list of symptoms I was exhibiting (from which I am told stems from the Hashimoto's, yet having suffered for almost 2 years, and having been diagnosed for about six months, I continue to suffer, and my GI problems have increased.) Although the abdominal pain began way before I exhibited symptoms of Hashimotos (but it was assumed much of that was due to my having an eating disorder.)

Most recently, my GERD has gotten out of control, and I have been on Prevacid for several months. I know if I don't have my previcid, I'm sure to be more miserable than usual.

I have also noticed over the last couple of months my stools have changed drastically. I have never had "normal" stools, even when I was a kid, but it was never really looked in to. Having had an eating disorder for so long, again, "normal" wasn't an appropriate adjective used to describe my bodily functions. However, now - it's pretty safe to say that something is very wrong, something other than the Hashimotos.

For example, I have noticed (randomly) that my stools can often smell foul. I mean, foul. I have also noticed that intermittently my stools are either a) very strandy and thread-like have what appears to have white spaghetti looking things in it c) have occasionally had specks or strands of blood <--- that has only happened like three times d) often have undigested food e) often have fatty or greasy deposits and f) are either very dense or not well formed.

I have a doctor appointment on July 2nd (seems as though my life is lived in the doctor's office!) This is a new doctor, and internal medicine doctor. I have many things I have to address with him, and this is definitely one of them.

I guess I could use some direction, because right now the most help I have gotten is from people who have struggled with such health issues, and not the doctors who are supposed to be treating them

It really scares me everything that is going on. It terrifies me, actually. I guess I wouldn't be so scared if there were answers, or a set path or know-how; all the questions left unanswered and the suffering left unrelieved, at times, gets the best of me. It's exhausting, and oftentimes a very hopeless place to be at. Even when I get my pro-active "oomph" so to speak, it's hard to keep at it, when it seems all I'm doing is running around in circles.

Anyone??

Thanks,

~Jessica~

[missy'smom]

Welcome.

Your symptoms and history seem consistant with celiac disease and the stories of many.

Any problems that you are having with meds and dosages may be resolve after a while on the gluten-free diet, assuming that you have celiac disease. The gluten damages the villi in the small intestine and they are resonsible for absoring nutrients, meds etc. The fewer or more damaged the villi, the less chance for absorbtion. The good news is that they can heal and regrow. As an example my sister was on anti-seizure meds and taking the highest dose and it was no longer working. After gluten-free she has had no more seizures, at the very least she is now absorbing the meds and they are working again. There is hope.

[Live2BWell]

Missy'sMom ~

Thank you for your reply, I appreciate it

I am [not-so-pleasantly] surprised that doctors are not more thorough. It's indeed a tragedy, as I think there is so much needless suffering that people go through because doctors seem conditioned to focus on a very narrow part of the big picture.

Your sister's story is amazing, and from what I understand a common one. I have heard good things about Gluten Free lifestyles, and that they often do a 180 on medical problems.

I would be interested in hearing other stories similar to mine. I have heard a lot about children with Celiac, and I am reading a very good book right now called "Wheat Free, Worry Free: The Art of Happy, Healthy Gluten Free Living" which is by a woman with a Celiac child.

I do have a few questions, that you may [ or may not ] be able to answer.

* Is Gluten free the same as white flour/sugar free (I did that for about a week and a half in the hospital, and at first I went through horrible withdrawls. I was also withdrawing from Caffeine. After the first four days, I started to feel better, actually, but I couldn't keep it up for very long after I discharged.)

*What causes Celiac Disease? What is the damage [and why?] How does it work? Can my past history be an influence to developing Celiac? How should I talk to my doctor about my suspicians?

* Is a Gluten-Free Diet hard to adhere to/adjust to? It seems so complicated to me, foreign almost! I can hardly understand all the information/terminology, etc., and from what I understand nearly everything has Gluten in it.

Well, thanks again for all your help!

Have a great night

[imsohungry]

Hi Jessica and welcome!

1) Briefly, Gluten free means avoiding wheat, barley, rye, and (for most) oats. It is a learning process due to the sheer number of ingredients in any food (prepackaged or not).

I am not going into more detail b/c I don't want to overwhelm you. I'll be glad to post more details if you would like.

2) Once you learn about the gluten-free diet, you get used to what you can have...and it eventually becomes natural.

For any ingredients you are unsure about, you can call the manufacturer or post your questions here

Most "natural" foods do not contain gluten (i.e. fruits and veggies, meats, etc.). However, you need to make sure that there are no additives/sauces used in the meat that may have gluten. The easiest way to begin the diet is with "natural" foods (i.e. eggs, meat, fruits, veggies, and natural cheeses).

You are correct. It is SO difficult to find a doctor who is willing to take the time to put all of the pieces together. I finally found a doctor who was willing to try and do this, but it took many years.

I wish you the best. Don't hesitate to post whenever you need to!

-Julie

[missy'smom]

Here is a link to the Celiac Sprue Association Website. I hope you will find it to be a helpful resource. It was to me when I first started. Open Original Shared Link When you are ready to start the diet there are very good lists of safe and forbidden ingredients on this site. (Celiac.com). Just pop in and ask anytime.

[Live2BWell]

Thank you again for your helpful and supportive replies, you have no idea how grateful I am

MissysMom ~ I have that site bookmarked on my explorer. I have looked at some of it, and thus far it HAS been helpful, thank you! I'll definitely be referring to it more often (it is so helpful, infact, I haven't been able to sit down and go through it all!) Thanks again!

Imsohungry ~ I would like you to go into more details, no worries about overhwelming me. Right now, I am so underwhelmed (actually, undereducated) that I could use some detail, maybe that'll give me more of a sense of direction! So, go for it