chatycady

Today the Dr. called and said my blood test was "inconclusive". and he wants to do a biopsy, but first I have to start eating gluten again. I CAN'T!! I get so very sick! My ears start to ring, my heart races, my stomach cramps into knots and then my blood pressure drops dangerously low. I told him this, but I don't hink he believes me.

My husband said he was going to live in the barn with the dogs if I go back on gluten! 4 weeks of pure poison. I won't be able to work or function.

Do I really have to do this for a diagnosis? Isn't my reaction enough to determine celiac?

He only tested the IgG and IgA wasn't he suppose to do more? One was 28 one was 35. I don't know which was which the nurse didn't really know what she was telling me over the phone either.

Please help me. Do I really need a confirmed diagnosis? I know I'm whinning. I really had hoped for a negative so I could forget it and continue on my gluten free diet. I'm so frustrated! And scared!

chaty

I ate 3 pieces of whole grain toast yesterday as a self-test, and man were the results not fun! I've been gluten free for a few weeks (probably a little here & there -- do Reeses Peanut Butter Cups count?)

Anyway, my throat felt itchy after I ate the toast. A couple of hours later, my voice got weak and my jaw felt like it was being squeezed. I almost reached for a benedryl! I got kinda itchy as well. I really felt out of sorts. This morning when I got up I had a HUGE anxiety attack. I almost went to the ER, but my hubby talked me down and I took 1/2 a sedative instead and went back to bed. I feel like I've got heart palpatations, but my pulse seems OK -- slow & steady.

A couple of hours later I had D with bile colored bits floating on the top (sorry.) Now I feel somewhat better.

So why did I do it? I had wanted to begin eating a little of everything in preparation for my gastro appt. next month. I do NOT want to face a specialist who thinks this is all in my head! But now I know why so many of you say you will trade being undx'd for not ever doing gluten again. I think I'll go another route and just do an allergy panel and see the integrative doc. I will ask the gastro to do a scope anyway, just to rule anything else out.

Wow, what a crazy 24 hours this has been! I hope you're all doing better than I seem to be at the moment!

I believe you had an acute allergic reaction. I too have similar reactions and then my blood pressure drops real low 75/45. I believe you should have gone to the ER. This is somewhat dangerous. Next time you may be headed for a true anaphylactic shock!

A food allergy can affect one or more of the major body functions such as respiritory, digestive or circulatory. Sound like it hit all three for you. Be careful!

Next time they bring doughnuts be sure to ask "Where is my gluten free doughnut?" Did you remember me?

I am totally confused. I had the TTG done and it was normal. Does that mean I don't have celiac?

The gastro Dr. today took more blood for the IGA(whatever it's called) test, I think. Why would he take that test if TTG was more accurate. Help, I don't understand any of this.

I dont eat breakfast

~ lisa ~

I hope you do! I read something that there are certain hormones released within the first hour of rising if you eat breakfast. And eventually they will stop if you don't eat breakfast and then you get sick. Can't remember which website I read that on.

You may reconsider as you get old like me!

I am allergic to the antibiotic sulpha. There is no test for it, just that I get really sick and my Dr. made a note of it and never gives me sulpha.

I'm allerfic to gluten, and I get really sick if I eat it, therefore I will never eat it again. That's how I explain it. People can relate to that.

Hope that helps!

I think this is going to be the hardest meal of the day for me as I can't possibly eat eggs every day and I can't eat dairy (except butter)

My requirements for breakfast:

-gluten and casein/lactose free

-must contain protein to keep my blood sugar balanced (hypoglycemia)

The combination of these 2 things makes it hard for me to figure out what to eat! Rice milk with a gluten-free corn flake cereal with fruit won't cut it because I need protein and/or fat in each of my meals!

Any suggestions? What do you eat?

aaahhhhh a fellow hypoglycemic lactose intolerate celiac! I understand completely. I'm sorta stuck like you. I vary my egg with sausage and bacon, or bacon and sausage! Real exciting I know. Let me know if you come up with something different. I snack on almonds. Lunch is a salad with some meat, lots of salad dressing (fat), olives, dill pickles. I feel much better. But breakfast is getting old!

No one really understands that we can't have carbs,,,. I'm just now starting to add fruit to my diet. It caused symptoms also, but I think this is working as my symptoms have subsided substantially. I think the gluten was more of the problem than carbs.

Hang in there. Food's not everything. I eat to feel good, so variety isn't that important.

I do want to work. When I worked on midnights I was very sick even though I was on gluten free diet. I never forgot this one instance, I was so sick that I had to be taken to the hospital. My doctor and nutritionist both agreed that maybe that being on daytour and being able to sleep at night would help me. It helped me alot. I am able to sleep 9 hours working the day tour but while working on midnights I could not sleep or eat.

I was told by my nutritionist that Celiac Disease is covered under the Americans with the Disablity Act not to get disablity but if you need extra time for lunch, or extra time in bathroom or change of hours. I like my job but I do not want to get sick like did while I was on midnights.

Loretta

You may want to check and see if you have an adrenal problem as a result of your celiac disease. Working nights may mess up your cortisol levels, I believe. That may be why you get sick at night...

Don't fee bad about the anemia. I went a long time before they diagnoised my pernicious anemia. They were talking about giving me a transfusion also, but I bounced back after B-12 shots. I had kids in grade school and high school and missed out on all their activities as I was too sick to attend them. Dr. asked me if I was depressed! Only when I turned yellow did they finally take me serious.

I even fainted a few times, and they sent me to a heart dr who told me I needed to just stand up slower so I wouldn't faint. Ridiculous!

Now it appears I may have another issue, possibly celiac. I go this week to an gastric guy. Who knows what he'll say....

Anyway, my backache has slowly gotten better. I'm two weeks gluten free. Thanks all! I actually was out brushing my ponies. They are shedding so Spring is very very near! Maybe I'll feel well enough this summer to ride again.

Chaty

I would suspect another "autoimmune" problem. Celiac can trigger more of them. Anemia (iron and B-12) can cause a constant headache and fatigue. Thyroid problems. Liver problems also can cause a headache and fatigue, your med's may be stressing your liver.

TIme to see a Dr.

You are much too young to be so tired and in pain. May God heal you quickly and completly!

Chaty

Thanks everyone. I just wasn't sure my backache was related to celiac. I will wait ... impatiently. I realize now I must give up dairy products as that may be causing some of this too. Your encouragement is wonderful!

Just an update. Of course my celiac panel came back negative since I have been gluten free for three months. The doc suspected it would be negative. Anyway, I just feel so weak to the point where I am going to pass out. I stopped my vitamins for a while thinking that they were not helping but started back on them yesterday. I just feel like walking death. Of course no one is believing it because I look the picture of health on the outside. I have lost 28 pounds in a year and a half, my blood pressure has dropped, my D stopped in November when I went gluten free, but I still feel so weak. I think I am dying all the time. I need to go to my regular doctor again but I know he will just look at me like he has no idea what to do with me. My GI wants to do a colonoscopy, but I really feel my body will not tolerate it at this point. I have already seen an arthritis doctor, my gyno, my regular doctor, and now the GI. Do I go to an internist next? Any advice would be great!!

What about anemia? Iron? or B-12? Pernicious anemia?

I've been gluten free for a week, but still have a back ache. It actually seems worse. Any advice or suggestions would help.

Thanks

chaty

Why does gluten cause such anger? I relate totally and find I need to "hide" until the rage and symptoms pass. Is there a mediacal reason for the anger?

So sorry for your troubles. I whispered a little prayer for you and all of us...

Potatoes are gluten-free, but some people still can't have them because they're a nightshade.

Be careful that the meatloaf is made with gluten-free bread crumbs!!

I love meatloaf,, do you have a good recipe with gluten free crackers? Are there such crackers?

As long as you make them with gluten-free ingredients, you can eat a lot of the same things you did before like pasta, french toast, brownies, and cake. Asianand Mexican recipes offer a lot of gluten-freeness, too. I recently tried my first risotto and it said gluen-free on the box.

I cut out all the simple carbs because it caused hypoglycemia, but do you think if they are gluten free I could eat them again?

Wow! Thanks for all the ideas! I appreciate them. Sometimes it's hard to come up with ideas. You all have given me lots of new avenues.

As for the test and gluten free diet, it was my understanding that a couple of weeks wouldn't make that much of a difference. It can take up to 3 years to heal. And now that I'm gluten free (1 week) I CAN'T go back cause I get too sick and I can't work. (Terrible cramps, back ache, heart races, blood sugar dives, blood pressure dives,,, etc. etc.) No matter what I'm not touching gluten ever again!

I want to know however for my family. I have a daughter with unexplained infertility and she has digestive problems and headaches. Doctors don't listen unless a person has a "medical documented condition".

Thank you THank you Thank you.

I've never heard of soy yogurt.... I'll check that out.

Hello; I have not been diagnoised as having celiac, but have started a gluten free diet. My blood tests were negative, but will the "endo" done in a week or two.

My problem is:

Pernicious anemia (B-12)

Hypoglycemia

low blood pressure - blood sugar dives, my blood pressure dives.

Lactose intolerant

and gluten intolerant. (possible celiac patient)

I could use some "new" ideas on what I can eat. I'm tired of bacon and eggs, almonds, and hamburgers and salads. Any suggestions?

Thanks!

Chaty