Unsure

[Nan2N]

I've been getting confusing info from my docs.

I tested positive for Celiac last March by the blood test. Negative biopsy.

I don't have my test results in front of me, but it was the Promethius test and my numbers were only slightly elevated.

Like if the cutoff was 10, I was 12. The EMA was positive.

I remember when I was having the biopsy, I was just going out of it, and I could hear the doc and nurse saying, sounding surprised that my intestines looked good.

Anyway, the story is, is that I'm not getting better going gluten free. The reason I was tested in the first place was because I was losing weight and hair so the doc ran an ANA test. The rheumie thought of celiac and tested me.

I never had ANY problems with foods before, no problems with digestion or anything so it was a complete surprise.

Since I wasn't getting better I kept looking and it turns out I have Lyme disease. (Thanks to Carla's thread!!)

So back at the GI's office a couple months later, ran another test, now my numbers are below normal. My doc says maybe I am latent celiac.

Because I am so thin and can't gain weight, my PCP tells me to eat anything....donuts or pizza, whatever I can tolerate.

He doesn't think I have Celiac and feels my nutrition and getting my weight up is more important.

THe other doc I see at my PCP, who's wife has Celiac, tells me he's not sure I have it by the report from the GI.

Didn't even refer me to a nutritionist, had to do that on my own.

My GI doc ran a ton of tests to see if anything else is going on, but everything is coming out ok. She wanted me to go to Boston, but I can't get there. So now we're thinking about Columbia University.

Sorry this is getting so long!!.....sooooo I go back to the GI office to see if there's something else we could look into locally. I see the nurse practitioner who tells me Celiac disease is a "wheat allergy" and my results are suspect. He said it's "like you're standing on a state line, which state are you in?" He didn't want to tell me to eat gluten, but insisted I go to New York to find out for sure.

They all seem unsure whether I have Celiac or not, especially since it doesn't seem to be helping. Like I said I actually feel worse. I never had problems before so I can't understand it. I had a blood test run and it says I have a moderate reaction to milk, and severe to eggs. I wonder since when??!! Never had a reaction before. Did skin prick testing which showed a reaction to just about EVERYTHING. My nutritionist said to do a rotation diet, but that's pretty tough when you're down to like 4 foods. I've been trying to add in some things. It doesn't seem to matter because I feel the same no matter what.

So anyway, I guess my question is....do you think I could possibly not have Celiac disease? I know I don't have the test results but the ttg was above normal by a couple points, the EMA was positive and I forgot the other.

I have the DQ2 heterozygous I think...10x normal risk. My GI was surprised everything went back to normal so quickly.

I wonder if all my misery is from lyme and I should just eat since I'm going to feel awful anyway. At least I would be full.

I don't know...sorry to question when the answer seems to be obvious. All this hit me at once and I've been sick for over a year. Before that was very healthy. I just can't get used to it.

I got some info from Columbia University, and there was a booklet on things you can and can't do with Celiac. It said you could go to McDonalds and ask for a hamburger without the bun. That seems like a CC risk to me....if we're supposed to be so careful why would they suggest that?

I just need some opinions if you don't mind. All this health stuff and having to research on my own really has me confused and overwhelmed.

Thanks everybody!!

[ShayFL]

Are you being treated for the Lyme?

[Nan2N]

Yes...I am being treated with IV rocephin and zithromax.

That's what I'm figuring my tummy issues are from. Although as soon as I started going gluten free (and I am VERY careful) I started having a lot of trouble. That was 4 months before I found out about the lyme.

My LLMD thinks the allergies started from the lyme. My GI thought maybe the lyme triggered the Celiac.

It's just weird how I started having more trouble and losing more weight after going gluten free. I eat as much as I can of what I'm allowed and still drop weight.

If I knew what would happen if I ate gluten I'd try it, but I'm scared. Don't want to add fuel to the fire!!

Plus my hair never stopped falling out after all these months. And believe me I have been tested for everything.

It's just all very confusing. I just want a regular roast beef sandwich!!!

[ShayFL]

Yes I would think those antibiotics are doing a number on you. Even though they arent oral, you should consider some probiotics to help heal your gut.

Have you looked into the SCD (Specific Carbohydrate Diet) to heal the gut? It is helping me. Like you, all these other issues popped up after going gluten-free. Things I didnt have before.

[Nan2N]

I do take probiotics, and Nystatin. Last thing I need is yeast! Yikes!!

Do you think the docs are wrong and it's a definite that I do have Celiac? The report says "supports a diagnosis of celiac disease, not that I do have it.

I know that damage can be patchy but why would they all question it? My ttg was 7.8 and the cut off was 4. Now they tell me it's below normal. So would that mean the damage is healed?

My GI doesn't believe I have all these allergies because I never had them before so she said to eat those foods and see what happens.

I haven't looked into the SCD yet, but I bet I'm pretty much doing that right now. I'm down to meat and veggies. I can't do sugars because of the lyme so I stay away from fruits and I'm afraid of carbs because of the yeast. I just feel so weak.

Too bad I'd already gone on a diet a couple years ago and lost all my extra weight. Maybe weight loss wouldn't bother me so much right now. I look like a skeleton. Can't afford to lose anymore. Never thought I'd say that!!

[mhb]

I haven't looked into the SCD yet, but I bet I'm pretty much doing that right now. I'm down to meat and veggies. I can't do sugars because of the lyme so I stay away from fruits and I'm afraid of carbs because of the yeast. I just feel so weak.

You really need carbs, but they don't need to have yeast. Eating almost nothing but protein and veggies would make nearly anyone lose a lot of weight, and also make you susceptible to the ketone problems (I don't know much about that. Others?). You probably need more calories through carbos (the 3rd needed macronutrient). Because your body doesn't get enough carbos for energy, it is burning all your fat. It burns carbos first, then fat. No carbos? The fat will melt off. That's what made Atkins so popular, but it's not healthy for the long haul. The SCD helps some, but when I looked at the list of allowed foods and not allowed foods, it didn't match my body's experience for me, so I decided I needed to get to know my "custom" SCD and follow it. For me that means, for example, sweet potatoes but not white potatoes. I go for easy to digest starches. Squash is another one, and in season now. Root veggies like beets, carrots, parsnips, sweet potatoes - all fill me better than many other veggies and I use them to control my gluten-free flour intake. Brown rice is easy to digest and provides carbos without yeast. Buckwheat is an extremely healthy whole, gluten-free grain. There are recipes for gluten-free, yeast-free flat breads you can bake. You need to find out what yeast-free starches your digestion handles and get some carbos for energy and calories. I'm taking you at your word that you only eat meat and veggies.

I could be wrong, but it's my take, in addition to other factors going on. Needs to be put in context of your other health issues, but maybe will point you in a helpful direction.