chatycady

I'm exhausted and miserable. Went to a steak house Friday night, asked them politely if they added sauses, etc. anything to their steaks and was told no. It was delicious, but I believe it must have been marinated in gluten. Anyway, within 45 minutes the symptoms started and now this is Sunday and I'm still out of it! My blood pressure drops so low. It's 75/40 and I can barely move.

All the other symptoms have subsided, but how do I get my pressure back up? I'm angry, depressed and just worn out. Why didn't they tell me the truth? WHy can't they just be honest and say YES our steak will make you sick! I would have settled for a salad and baked potato. My weekend has been ruined bcause of this!

No one seems to know much about this disease. THey think I'm exaggerating!

At least my husband sees it. He knew before I did that I was headed for trouble.

I think I'll call in sick tomorrow.

Sorry to be such a big baby, but I feel like Im back at the beginning and have to start all over again.

I'm from Iowa and most the beef and dairy cattle here graze on pasture, are fed alfalfa hay and feed made with ground up corn. We don't grow wheat here, but oats. Most of the oats in my area is not harvested as grain, but as hay or oatlage.

Horses like oats, but it makes them frisky and fat!

If cattle were allowed to graze only, on "native" grasses, they would be skinny and their meat tough as leather! There is nothing better than a juicy Iowa corn fed beef T-bone steak with a glass of wine!

Before I was diagnosed with Celiac, I was told I was hypoglycemic. Therefore protein was what I ate. I continue to follow that diet and have added carbs now. I read that a person who eats protein (bacon and egg) for breakfast will eat 300 calories less a day than someone who eats cereal or carbs.

I've been gluten free for 2 months, have lost my poochie bellie and am slowly regaining muscles. I do walk with a friend 3 miles 2 to 3 times a week. Before gluten free I crashed everynight in my recliner as I was washed out. Now I'm up moving til 10:00 p.m.

I sleep better, 8 hours a night, and am able to jump out of bed and go go go!

I don't really care if I gain weight. I'm HEALTHY!

I too had terrible nightmares, not to the extreme you have had, but I would wake up in a sweat, heart racing and felt like I had run 3 miles! This has all gone away. I am about 8 weeks gluten free and it's been wonderful!

It may take awhile to get into a normal sleeping pattern and I still wake up around 2:00 and can't fall back to sleep, but it isn't as often. I sleep good when I walk with my friend after work.

Take care. and sweet dreams.

I too can relate to bone pain. I used to put damp towels in the microwave and heat them up and wrap my legs with them. It really helped! I was very low on B-12 and very anemic. My blood work came back "inconclusive" for celiac. I didn't pursue anything further, just stuck with the gluten free diet.

I'm am symptom free. I have been very dliigent with my diet and eat lots of protein and "good" fat. No more junk.

Good luck and God bless!

Can anyone here tell me if there is a relationship between unexplained infertility and celiac? My daughter has unexplained infertility, long cycles and it appears she starts the ovulation process but doesn't finish. Is there a link here? I haven't found much on this topic.

Thanks for any help and advice you can give. She has been to many Dr's. and none have suggested being tested for celiac.

I was diagnosed with pernicious anemia about 11 years ago. My hemoglobin was 7 and should be around 13. (I think that's right) I was pale and turning yellow. Also hands and feet and legs tingled. Then Dr. gave me a shot and within an hour I felt a flush and warmth flow through my body. My staff was watching me and saw my color return right before their eyes. It was truly a miracle! I give my self injections once a month. I still don't like to do it, but I get the job done.

I've tried other methods of B-12 but found the shots were the best method for me. B-12 is cheap. It costs with needles probably less the $2 a shot. (with insurance of course)

Guess I will be taking B-12 shots for the rest of my life.

My ears ring really bad when I'm gutened. Anyone else have this problem? Or is this unrelated? It is rather anoying at times.

Mammagoose is right! There is tons of information on this sight that is helpful. I started to feel better also, but was still having troubles and then I read on this website, that I may also have lactose intolerance. There is a good article about why lactose may be a problem. Hopefully in a few months I'll be able to eat cheese again.

Everyone here has a story to tell. I hope you get better so you can enjoy your family!

My Endocrinologist suggested I may have celiac. He did one blood test ttg or whatever and it was negative, but before I got the blood tests back I started the diet and within 2 days I felt much better. The Gas. Dr. wanted me to start eating gluten so he could take a biospy. I refused, as I know how bad I would feel.

I would see the Dr. and have blood work done to make sure you aren't anemic, etc. But if you feel so much better, why make yourself sick just to confirm a diagnosis? You have already found the cure!

My son was feeling poorly also and he's eating more "real" food. Steak, potatoes, and veggies. He says he hasn't felt this good in a long time.

The Dr. said you can't be glutened unless you eat it. Although I believe handling gluten may cause problems. I cut up a bunch of doughnuts for some friends. Washed my hands and I had an allergic reaction. Red flushed face, heart raced, and felt lousey. But maybe I didn't wash my hands good enough and I accidently ate some crumbs. I learned a lesson.

I have heard that inhaling flour dust can cause allergic reactions.

Congratulations on the weigh loss. This wouldn't be bothering him would it?

I've been watching my diet very carefully, yesterday I was hungry and I ate carb's instead of protein and I've dived! My blood pressure dropped to 80/45 and I'm sleepy, exhausted, weak and dizzy. Is this celiac related? Am I unable to digest carbs right now because of celiac?

I am 100% positive I didn't not eat any gluten.

Does anyone know about this? Thanks.

I had some itching, like you have. I have also had hypoglycemia. I found if I ate protein and less carbohydrates my "itchy" problem ended. I think you are torturing yourself by trying to eat gluten, expecially since you know it's a problem. I hope the best for you, hang in there.

I have had neck pain, pain between my shoulders, and low back pain. It has finally gone away. I also suffered from terrible leg cramps, and stomach cramps that would wrap around to my back. I have found that was caused by low blood pressure, a symptom of an allergic reaction. Is your blood pressure low after eating gluten?

Hope this helps! And hope your pain disappears as mine has!

I read somewhere, don't remember where, that it takes the brain awhile to catch up to the body after a lengthy illness. The brains still reacting like it is allergic to something even though there is nothing causing a reaction.

Does that make any sense?

I believe so, although I'm not a Dr. My blood tests were negative and I refused the endo as I was required to eat gluten again. I have struggled with iron anemia and about 10 years ago was diagnoses with pernicious anemia. Based on this information and family history of autoimmune problems (thyroid and arthritis) the Dr. was suspicious and thought I may have celiac.

Unfortunately there is no "for sure" diagnosis 100% of the time. They may not find anything, but you may still have symptoms and may still have celiac. The diet, in my opionion is the "true" test. Do you feel better once you eliminate gluten? Yes, or no. Only you can decide.

I really wish I could make you feel better! You sound like you have a major reaction to something that is making you so sick.

If you had an allergy, say shellfish, and you swelled up, turned red, threw up, and went into shock would you continue to eat shellfish? That's what the Dr. is asking you to do! THen if your test is negative, he tells you you can eat all the shellfish you want. So would you? Of course not! You and only you can take charge of your diet.

My Dr. also wanted me to eat gluten so he could do more tests. I refused and I am healing quickly.

I hope and pray you can find strength. May God heal you completey!

Yes I have had bad stomach pains. I thought I was passing a kidney stone once, or something like that. I was unsucessful in getting a "qualified" celiac diagnosis and went on the diet anyway. I no longer have any pain. Carbohydrates still flow through me pretty fast, but no D.

Have the blood test and then make a decision. Hope you find a answer and soon.

She does not need a referral, unless her insurance requires it. However, the Dr. that was in Iowa City and who established the celiac unit is now in Rochester at Mayo. Everyone loved him and said he was very good. I would recommend Mayo.

I am in Dubuque and the Dr's here don't know how to order the proper blood tests. (Celiac Panel)

The dietician at HyVee however was extremely helpful. She talked to me, gave me a food list, websites, and spent time looking at my food I had in my grocery cart. At least get her started on the diet. They have Hy Vee's in Cedar Rapids.

I hope the best for both of you and will pray for both of you. Let me know what you decide!

Chaty

I was diagnosed just recently with reactive hypoglycemia. That was before I heard of celiac and changed my diet. The hypoglycemia is gone,,,, for as long as I am gluten free.

I was sick for 2 days after the glucose test. Is it possible there was "gluten" in the glucose? It tasted fruity and was pretty thick. Maybe they glutened me.

Blood test showed reactive hypoglycemia.

I too have pernicious anemia. And will give my self monthly injections for the rest of my life. I was diagnosed through the "Shillings" test. Don't know if they use that anymore.

You can be anemic, due to poor absorption. I do not have that problem. I lack intrensic factor. Pernicious Anemia is an autoimmune disease.

I decided not to do it. I was going to have it done so I could have a diagnosis for my children. I think if I tested positive they would be more serious about checking them out. ALso, my dad has real bad ezcema.

But I just can't afford to be sick for a month, and I really think I would end up in the ER. Thanks for all the comments. They really, really helped in making my decision!

  Tritty said:

I actually am glad that I had my biopsy done. It was not a big deal and they did find some answers to some other questions. I have a small hiatal hernia and now that I know about it, I can try and keep it small

I also have some erosion in my esophogus that explains some issues that I have with getting food to go down.

I KNOW I would not have gone back to gluten for it though. I was way too sick and loosing WAY too much weight...

How long have you been off?

Only 2 weeks. He insists I need to start back on gluten. I question whether or not he knows a lot about celiac. I don't think I can heal in two weeks. I'm not worried about the test, it's the thought of my reaction to gluten. I believe I have anaphylactic reactions, and I could pass out and end up in the ER.

  happygirl said:

You asked for opinions. You are obviously in the right place as we all have them in regards to gluten!

Yes, your doctor should have run the full Celiac panel. Ask him point blank why he didn't?

The tests are:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

You don't have to do anything you don't want to do. I don't know what the reference ranges were for your tests, so I don't know if your "scores" were positive or not. But, if they were positive, it indicates a problem with gluten.

You don't need a prescription to go gluten free. You don't need a doctor's permission to take something out of your diet. People (i.e., doctors) often overlook the important of the patient doing better....a positive dietary response. Doctors are often so wrapped up in the tests that they don't see what is in front of them. (the whole story of a patient going in, and saying "Doc, it hurts when I do this" (insert any action). Doc says, "Well, don't do this then!") In a symptomatic patient, the goal of the patient is to relieve the symptoms. If you have symptoms on a gluten filled diet, then it is (to us, and to you, but not your doctor!) common sense to stop eating gluten. In all honesty, on a day to day basis, it doesn't matter but *so* much if you have confirmed Celiac or call it a gluten intolerance. Th diet is the same. Now, some people need a confirmed dx, to help them stick to the diet, but that is a personal decision.

You can tell your doctor that you do not trust his medical care because he did not run the correct tests and that you will find other care. Do you need other care? I don't know what to say. But if you feel confident that gluten is your problem, and do fine on it, then that is great. When you do see a new doctor, you can just tell him/her that you noticed that you reacted to gluten and stay away from it (gluten intolerant). The other thing to keep in mind is this...say you went back to eating gluten, and had the biopsy. What would happen if it was negative? Would you still stick to the diet? If the answer is yes, you are still ending up in the same place, it depends on the path you want to take to get there. A biopsy can rule Celiac IN, but cannot rule it OUT. (A negative biopsy does NOT mean that you do NOT have Celiac).

Best of luck, and I hope this helps your thought process!

Laura

He only ran the anti gliadin test and a prior dr only did the TTG it was negative.

  Tritty said:

Ok...I'm new at this too, but I think he should have done a ttg too?

How long have you been off of gluten? My doctor didn't make me go back on for the diet - I was gluten free for almost 5 weeks and there was still plenty of damage to see...

I'm sorry, they did a TTG earlier and it was negative. I believe, because of my symptoms he wants to do the biopsy. But he also wanted to do a colonoscopy just because I'm 50. I think he just likes to do these tests

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