Questions About A Loved One

[Dixiebell]

Hey guys. My young adult daughter is having intestinal problems. She made me aware of this in the spring around the time she was getting married. She was having D with blood and pain.(she said it was not much blood) I did ask her at different times if it had cleared up, she would say it was. I didn't hear much else about it until she moved away and said she was having D again. Then it would clear up again. Now she is scared because she is pregnant (5-6 wks) and it is happening again, but worse. She was scared enough to go to the emergency room (this child will pass out at the sight of blood or needles and has panic attacks at the Dr. office) and they gave her an IV and took blood samples, stool and urine. They think it is an infection, gave her some meds and have referred her to a GI.

My question is, from your experiences, what do they need to be looking for? I would like to arm her with as much info as I can so she can request certain tests or procedures. Thank You.

[nora-n]

Could be one of the other bowel diseases like ulcerative colitis, or morbus crohns.

But I hope it is only celiac, as one gets cured with just the gluten free diet.

Now the tests to ask for are:

total IgA

tissue trasnglutaminase IgA

Read this link, and watch the video:

Open Original Shared Link

[cassP]

i would have her ask for all the tests ( i THINK they only took 2 vials from me):

total iga serum

Tissue Transglutamas Iga & Igg

Antigliadin Iga & Igg

Endomysial Antibodies.

order them all- she's pregnant and she needs as many answers as possible right now.

and then after testing- maybe she should go gluten free- as long as it doesnt stress her out. if she is celiac or gluten intolerant- then going gluten free is only going to help her have a healthy pregnancy

[nora-n]

yes, the more the better.

Now many labs have the new deamidated gliadin test, which is supposed to be better than the gliadin antibody test

[Dixiebell]

She had to go back to the ER last night because she was not getting better. She couldn't hold anything down and is still having blood (sometimes just blood) in her stool. She kept texting me and was saying that the ER Dr, was a jacka$$, no one was being nice and she saw a 4 INCH NEEDLE . She is really scared of going to any Dr. She was ready to leave and somehow, somebody got her to stay. Thank you to whoever that was. They gave her an IV again with some antibiotics and are also giving her zofran and zantac. They told her the stool sample from Fri. has not grown bacteria. What does that mean? She does have a GI appt. on Thurs. She said the jacka$$ ER Dr. asked why she couldn't go to her appt. on Thurs., she said she could but she was getting worse and she is scared. I am the one who told her to go back. I guess he needs to call and fuss at me .

I have told her that after all her testing I feel that she should go gluten-free for her and the baby. It will just be healther for them both.

[cassP]

. They told her the stool sample from Fri. has not grown bacteria. What does that mean?

im sorry i hope she feels better soon.... so i dont know what the above statement means... could it mean she doesnt have any healthy gut bacteria???? idk... just guessing. if she's got no healthy bacteria in her tract- then she can easily succumb to any bug... idk, hope you guys get answers

[Dixiebell]

I found this on WebMD

Stool culture

Normal: No disease-causing (pathogenic) bacteria, viruses, fungi, or parasites are present or grow in the culture.

Abnormal: Bacteria (such as salmonella, shigella, campylobacter, certain types of Escherichia coli [E. coli], or Yersinia enterocolitica) grow in the culture. Fungi or parasites such as Giardia lamblia are found.

[Dixiebell]

Update:

She went to the Gi today and was there a really long time. She said they were going to take 24 vials of blood, but they just did 12 today. She did say that they were sending most of the samples out of state for testing. They also put her on a heart rate monitor for 24hrs because it kept going up while she was there. She said the GI went across the hall to get the cardiologist to check on her. He also wants to do an ultrasound. She said he was testing for celiac. By the way, she is married to a Marine and they go to the Naval Hosp. He also said she might end up being a high risk pregnancy. By the way she talked, the GI Dr sounds like a good Dr. He asked her a lot of questions and listened to her. That makes me feel a little better. Oh, something funny, she said the cardio Dr had very hairy ears on the outside not inside like you would think. Hopefully she will get some answers soon.

[cassP]

Update:

She went to the Gi today and was there a really long time. She said they were going to take 24 vials of blood, but they just did 12 today. She did say that they were sending most of the samples out of state for testing. They also put her on a heart rate monitor for 24hrs because it kept going up while she was there. She said the GI went across the hall to get the cardiologist to check on her. He also wants to do an ultrasound. She said he was testing for celiac. By the way, she is married to a Marine and they go to the Naval Hosp. He also said she might end up being a high risk pregnancy. By the way she talked, the GI Dr sounds like a good Dr. He asked her a lot of questions and listened to her. That makes me feel a little better. Oh, something funny, she said the cardio Dr had very hairy ears on the outside not inside like you would think. Hopefully she will get some answers soon.

TWENTY FOUR VIALS OF BLOODDDD???????!!!!!!!!!!! WHAT?????

omg, i could never do that... i pass out after only 3 vials- GOOD GOD

[Dixiebell]

Well, on her own, she decided to try eating gluten-free. She has been gluten-free for about six days now. She called to tell me that on her third day she noticed the blood in her stool had lessened, a lot. So hopefully it is just gluten causing her problems. She is now drinking boost a couple of times a day, I was so worried about her loosing more weight. I did tell her to call the GI nurse first and ask if it was ok. The nurse also said the GI Dr. would be in surgery all day today but they would be in contact with her, I guess following the surgeries. I'm hoping her tests results will be back soon, maybe today.

I sent a box of gluten-free dry goods to her today, Pamala's baking mix, Tinkyada pastas, mac and cheese, crispy bars and various things to help her out. Apparently the only food stores they have are food lion and walmart.

[nora-n]

One might have to start off eating gluten free items slowly, as theya re full of starches, and the enzymes to digest starches are made at the tipp of the villi, which are shortened and damaged at the tip.

same for milk, the lactase enzyme is made at the tip ov the villi.

And half of the celiacs have problems with milk, but many get better and tolerate milk after a while.

[Jaymie Jaymz]

I sent a box of gluten-free dry goods to her today, Pamala's baking mix, Tinkyada pastas, mac and cheese, crispy bars and various things to help her out. Apparently the only food stores they have are food lion and walmart.

I hope your daughter feels better soon. What a scary thing to be going through while pregnant. Our walmart here carries a number of gluten-free items, so she can check and see if hers does as well. They aren't things I noticed before until I went gluten-free. Ours has pasta, spaghetti sauces, Bisquick mix, cake mixes, Pamela's cookies, and other things.

I stockpiled a bunch of gluten-free goodies at first because it made me feel better to have them, and I didn't feel so deprived when everyone else in the house was having their gluteny versions of certain foods and treats. BUT, after a few weeks now, I'm realizing how unhealthy these products are. They lack fiber and other nutrients (aside from quinoa and other similar grains).

It's best to try to stick to good old fashioned, gluten-free foods like meats (without breading), vegetables, fruits, and nuts.

[Dixiebell]

Thank you! She is still waiting on test results. The main reason I sent a box of dry goods is, well, they really can't afford them. She called last week to ask about certain gluten-free foods, if they were good or not, and then sent me a text saying that they had to put most of their groceries back because they didn't have enough money. It made me so sad. There I was, in the store buying stuff and I just wanted to cry. I know they need to learn to budget, but now that she is so sick, she can't even think of working.

[tarnalberry]

It may help them the most if you can help them transition to a naturally gluten free diet. Maybe a cookbook or file of recipes that relies primarily on inexpensive, gluten free items like beans, lentils, and rice.

[cassP]

can she get in to omelettes?? Or "breakfast for dinner"? eggs and veggies is one of the few ways to do gluten-free more cheap... I also do a big pot of tinkyada with canned salmon,broccoli,peas,evoo,romano-yum (salmon has hardly any mercury while tuna is best avoided while pregnant)

and search this forum- ive seen a lot of cheaper and easier recipes on here- casseroles,etc.. They might actually be more economical if they're always eating at home instead of eating out

[Dixiebell]

She told me that her Dr. said her results were negative. I will have her get copies. She has improved dramatically since she started gluten-free. I called her today, we only talked for a minute, and she told me she ate gluten yesterday, on purpose . I could not believe it. She said "it did not make me sick". I have been so stressed out this evening over this. I did tell her that she should wait until after the baby is born to try gluten again.

Do you guys have any advice for me to give to her?

[T.H.]

Well, there's I think a 20% false negative for the celiac disease tests?

If she improved going gluten free, then I'm with you - stay on this until the baby is born. Because tests don't tell us everything, sadly. And if she's wrong, the baby AND her can suffer for it.

Many people do not have any symptoms that hit directly after eating gluten. Some get symptoms a day or two later, like my father. Some don't have symptoms after one gluten ingestion - outward ones - but have internal issues that can grow and cause problems the more gluten you eat. Like a pinprick is hard to see, but draw a lot of pinpricks and suddenly it's visible. It doesn't mean the first pinprick didn't happen, it just didn't make enough of a problem to notice at first.

Obviously, if she wasn't pregnant and ate gluten and started getting sick again after a while, then she'd know. But if she's pregnant and this happens, the baby can be suffering from nutritional deficits during the time when she's being harmed but doesn't have symptoms. Or her body will take the nutrients from her to feed the baby, if she has any to spare, and then SHE'LL be nutrient deficient.

Now - could be it's something else and gluten is coincidental to her getting better. But if the doc has NO idea what was wrong, and she got better going off of gluten? Well... Seems like the most likely solution, yeah?

Something that might help? See if any of the tests were for nutrient deficiencies. If they weren't, might help to test for that if she's still on gluten, to make sure that she's getting enough vitamins and minerals.

[Dixiebell]

My daughter called a few minutes ago to tell me she thinks she needs to be gluten free. She said that she is getting sick several times a day now and can't keep anything down. I did tell her it might take a few days for it to hit her. Hopefully she will stay gluten-free now.

She also told me she has had terrible headaches for 3 days.