Confused

[pullieq2]

Ok, Im not officially dx yet. Waiting on my blood work. But, I've had some time to mull the situation over after reading and educating myself here. Now, I've got some questions about a few things that have been nagging at me. I was hoping someone may be able to give me some ideas to shed some light on things.

So, I had my upper gi endo before the blood test. The GI doc says bad inflammation. Puts me on the gluten/lactose free diet. Says she doesn't know what's causing it and also adds the antibiotic for travelers diarrhea/toxic gut bacteria and orders the test for celiacs.

First, if the biopsy didn't show bad villi, why consider it celiacs and exclude dairy? Second, why put me on the antibiotic? I didn't have diarrhea. And, unless the biopsy was conclusive, why consider that my liver wasn't processing toxins properly? Not to mention, unless she is doing a check to see if I have the gene, why put me on the diet before I get the blood work?

Now, I just wanna vent. If I may? My ex and son don't take it seriously, so Im sure CC is a daily thing for me, since they live with me. It's a struggle. And, Im so overwhelmed. I can't afford to go and buy all new dishes and throw all of my HH items away. Christmas is coming, yay, but the only family I have left, besides my kids, is my mom. None of which can help me. I feel defeated, except that I feel so much better than I did by not ingesting gluten straight up. Since the last time I did that my reaction time was 15 min, I will not be doing it again. It was the most painful experience ever.

Sorry for the vent, I just wonder where it will all go after the dx. It explains so much and next will come all of the after dx testing. Can't say Im looking forward to more. Thank you for this site. It is a tremendous help.

[mushroom]

The first thing you have to understand is that doctors are not as well versed on celiac as we would expect them to be. Most don't understand the continuing need to eat gluten for accurate diagnosis until all the testing is done. At least yours recognized that celiac is a possibility. Now I have no idea what your biopsy report actually said, but you do mention severe inflammation. This is a very general indication that the gut is not happy, that it is reacting to something, and that something could be a lot of things... one of them being beginning celiac disease where inflammation is usually the first indication before all the other bad stuff happens. When the doctor was talking about inflammation, was that reading from the biopsy report, or just telling you what she saw through the endoscope?? Damage visible to the naked eye is different from that seen only through a microscope. There may be more there that she didn't understand and/or share with you.

Now the biopsy is considered to be (or used to be) the "gold standard" test for celiac disease - you could not previously be diagnosed celiac without passing that test, which is normally done after the blood tests come back positive. And now you are waiting to see what your blood tests say. But you don't really know what your biopsy results were. You need to get a copy of the biopsy report (assuming the doctor has it already) and tell us what it said if you don't mind sharing. That would go a long way toward understanding where you are at. She is obviously doing the blood work to see if celiac could be causing the inflammation, and she is giving you the antibiotic (what is it?) to kill off any bad critters that could have taken up residence in your gut. These guys can invade and take over your damaged gut just out of nowhere, it seems. It is called traveller's diarrhea because it usually comes from drinking different, untreated or insufficiently treated water with bacteria your system is not used to dealing with. So she is trying to cover all the bases.

I don't recall what your liver issues were/weren't that this came up, sorry.

We can hope that after you get a more definitive diagnosis your ex and son (who presumably lives with him?) will get on board with the program. However, bear in mind that it is possible for your blood tests to be negative and yet you still do not tolerate gluten. That is obviously going to be a harder sell for them. Presumably your ex is not cooking for you or spreading crumbs around so you will just have to deal with your son who is probably being told it is all in your head (reading between the lines here ).

Now for the pots and pans!! You do not have to throw everything out!! Start by discarding any scratched non-stick cookware.because gluten lurks in the scratches. Usually plain metal is fine with a good scrub. Cast iron can be put in the oven during a cleaning cycle and then reseasoned. Get yourself new plastic and wooden spoons (you can start with one of each) and a new cutting board, a new toaster and colander. These are the essentials. Add in a non-stick skillet if the budget goes that far, along with a new non-metal spatula. None of these need be expensive - you can get a toaster for around $10.

You just have to find support where you can, and by educating people. Lie if you have to and say you are a celiac - you don't have to mention the diagnostic process because your reaction is the same as if you were a celiac. Now, normally I would never tell someone to tell a lie - this is the only exception And when you aren't finding the support you need, come here and we will listen!!

[pullieq2]

Ty for the reply. Very helpful. The doc just gave me pics of the endo. She said the biopsy showed nothing unusual, except severe inflammation. So she had no definite answer to what was causing it. The medication I looked up on the website. The more popular name for it is Rifaximin. It treats diarrhea and liver.

As for the ex, he lives with me, so yeah, he cooks things for himself and leaves crumbs and garbage everywhere. I bought gloves to clean up so that I don't get dry skin from washing so often. Like last night. He orders pizza and gets it all over the cabinet. Gets the grease on my cig lighters, and on the coffee table and arm of the sofa. No escape.

I'll see what I can do about a copy of the biopsy report, but hard to do in this town. The docs are all just full of themselves and typically rude.

[mushroom]

So, a current -ex ?? Not so easy to handle. His current behavior is perhaps an indication of why he was an ex in the first place

Small towns can be hard where everyone knows everyone else (and everyone else' business )

You don't need to talk to the doctor to get the biopsy report - just ask the receptionist for it.

You really do need to lay down some firm rules for the ex. Reserve a section of the counter for yourself - no gluten touches it. Clean up after himself because you're not going to do it. Use paper plates and paper towels to place your food on so you can be sure it is not contaminated. HIDE your special utensils and cookware!! (under the bed if necessary). You need your own jars of spread and mayo specially marked and on a special shelf that no gluteny hands touch. Your kitchen, your rules!

[pullieq2]

Ty. Any suggestions mean a great deal and go a long way.

[Takala]

If you are celiac, the same damage celiac causes to the intestine lining is preventing you from easily handling dairy products right now. That may change after you have been on the gluten free diet for a while, and you may be able to add back in non lactose dairy products such as properly made yogurt and aged cheeses.

The biopsies miss the patchy damage sometimes. If you are having a positive dietary response to avoiding gluten, that is the most important thing. You could also be a non-celiac gluten intolerant, which is a catch-all category including the perpetually undiagnosed, and the gluten intolerant people who really do have a "gluten problem" but who don't have the positive test statuses like celiacs do to back it up, because currently, at this time, there is no definite "test". There are some genes associated with each condition that you can be tested for (and can be done over the counter) if you think you need "something," to prove to others, but your response to diet may be enough motivation.

Liver & gall bladder problems, kidney problems, and even brain problems (you can get brain lesions called "bright spots") causing neurological problems and nerve damage are some of the lesser known and acknowledged side effects of celiac disease.

If anyone balks at giving you a test result, remind them that, by law, they cannot withhold this information and they must provide copies to you upon request. And you do need to get the results because sometimes there are either errors in the information pipeline, they did the wrong test, or even worse, a doctor (rarely, but this is first hand experience for me) will see that their test/scan did show something that they were previously insisting was impossible, and try to withhold it. I had this happen to me when after an entire year of being tested for everything ELSE not related to anything, (after I told them I had a grain problem and responded to diet change) I was scanned (head and neck) and it showed the classic brain damage and also that I had severe bone loss problems in my c- spine, yet the doctor kept canceling appointments (office does not discuss test results in detail over the phone, and kept making me wait 2 months for the "next appt") and then when I finally wrestled those test results out, and then got the appt, the doc, to my face, was not only nasty but lied about my having any reason for any symptoms and accused me of being a sort of head case, then got up and walked out of the exam room. Since then, for the "big stuff," I take a family member along for a witness because arrogant does not begin to describe this sort of behavior. I have since discussed this with several other local physicians who are sympathetic, so I suspect they've heard other horror stories and may be doing referrals differently, or at least trying to make sure they get copies of the tests back, too. This bad doctor was really miffed I didn't want to undergo yet another invasive test for MS again where they sample the spinal fluids, to further rule out MS. I had already "flunked" one MS test and once was enough, had complications, and resolved never to go through that again.

My disease process, and subsequent healing once I changed my diet to gluten free and stuck to it for years (other than some parts of my spine are permanently screwed up) exist, whether or not the medical profession can put a name to it.

[shadowicewolf]

Part of me thinks some doctors should look into more than just the horses; there are zebras too ya know.

Some doctors are antibiotic happy. I kid not. I was given one (by a nurse pratitioner i think or something) when i had a fever of 101 (after tolyenal), stomach issues, vomiting, etc (this was the incident that sent me to the ER with a "mild" allergic reaction).

Some also don't believe outside of that. My old GP wanted me on anti anxiety pills because she thought it was all in my head Another thought i was being childish and should just grow up and deal with it.

Needless to say, i no longer like dealing with doctors.

I know the feeling. Trust me. But, so long as it makes you feel better, you should do it.

[DavinaRN]

Educate yourself. Case in point if I had listened to the surgeon who explained my lung birth defect to me, I would have eventually died from infection throughout my body. Instead, I researched and everything said remove the area. I really don't blame the doctor in this case, she went off the CT report and the two pulmonogist and two thoracic surgeons I saw had to go look it up (very rare-lucky me).

[pullieq2]

Ty all. Learning a lot here. With all of the info, I can be sure to grill her like a fish on the Bar B. Will be nice to go in prepared no matter the blood results. Appreciate all the input.