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Gastroparesis
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My daughter was diagnosed with gastroparesis. We are still waiting on the celiac panel to come back. I don't think it will be positive because she has been gluten free since Oct. What can you tell me about gastroparesis. They want us to put her on some medication that you can only get from Canada since Reglan makes her sick.

Thanks,

Claudia

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How did your daughter's doctor come up with the diagnosis of gastroparesis?

Is it possible that she has hypochlorhydria instead? Check this out:

http://www.healthdetectives.com/thehealthdetectives/id8.html

The symptoms are very similar, but you can treat hypochlorhydria without a prescription... you just need to take acid supplements. There's a very simple test for this. Try it first thing in the morning before eating or drinking anything else:

1. Put 1/8 tsp. of baking soda in 6-8 ounces of water

2. Drink

3. Start timing for five minutes... if you don't burp you have hypochlorhydria. People with enough stomach acid (or too much) will burp in first two or three minutes.

I have hypochlorhydria... it's a pretty common disorder, especially among people with autoimmune conditions like Hashimoto's, celiac, type 1 diabetes, etc...

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She had a test at the hospital where she had to eat something and then they took exrays every 15 minutes to see how her stomach was emptying. He said that it wasn't emptying like it should. Thanks for the information though.

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My daughter was diagnosed with gastroparesis about 2 weeks after she was diagnosed with Celiac. She, too, had the gastric emptying study done. Her GI thought it was a result of damage from the Celiac. She was on Erythromycin for a couple of months along with prevacid. (Her main symptom was "spitting up" even though she was 6 at the time - she wouldn't lose her whole meal, just a few mouthfuls 10-30 minutes apart). The erythromycin is an antibiotic which has a side effect of increased motility. She was on a low dose and suppose to take it 30 minutes before every meal. The problem is that it also has a side effect of nauseau. The gastroparesis never seemed to realy affect her appetite or her ability to ingest an adequate number of caleries although there are some things you can do to help that if your daughter has those issues.

The gastroparesis seemed to take about 9 months or so to clear up after my daughter went gluten free. (She had continued to spit up about once every two to three weeks then four, etc. etc. as compared to several times a day before she went gluten free).

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So if you have gastroparesis can it actually get better? The diet is very restrictive in the beginning and over the 3 phases can add additional food. Is there any getting past the 3rd phase? Can a person with gastroparesis ever be healed/cured?

Jennifer

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So if you have gastroparesis can it actually get better? The diet is very restrictive in the beginning and over the 3 phases can add additional food. Is there any getting past the 3rd phase? Can a person with gastroparesis ever be healed/cured?

Jennifer

I am by no means an expert . . . but I believe it has to do with the underlying cause. My daughter's GI thought my daughter's gastroparesis was due to nerve damage from the celiac disease. Nerves can heal/regenerate but it is a really slow process. My daughter never had a repeat study done to determine if her gastric emptying rate is now normal. We're just going with the fact that her presenting symptom is gone. Add to that, during that first nine months when she would have an occasional "spit up" that we could not trace it to anything and a follow-up blood panel came back with fantastic results which we interpreted as doing a great job following the diet. The episodes got further and further apart and the doctor theorized that it was probably just the slow healing of the gastroparesis. I will also add that from the get-go, the GI did not think my daughter's gastroparesis was permanent but I do think he thought it would resolve quicker than it did.

I know that some people with gastroparesis are not so fortunate as to be able to remove the underlying cause.

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Thanks Janet,

That does answer some questions. My sister has the gastroparesis and has just found out she has the celiac. Basically found the celiac because I had been diagnosed and pushed her to be tested. I'm hoping once she gets the celiac under control her health will improve.

Jennifer

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I have gastroparesis. I don't have celiac. The cause for me is diabetes.

Basically I follow a diet of easily digestible foods. Chicken, ground beef, rice, pasta, potatoes, bread, green beans, some cereals and some other vegetables. I can eat hummus and dried beans. Not everyone who has it can.

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Thanks to all who have replied. She does have severe nausea and occasional vomiting. The vomiting was much worse before she went gluten free. I'm hoping its not permanent. The doctor told us she would have ups and downs with it. Is there a specific diet for it? Her doctor hasn't told us too much about it. I've read some online about it. She has another appt. on Jan. 14th. He said we would talk more about it then. Her old gastro doctor suspected it but never told us he did. I found out about it when we got her records from him for the new doctor. I still think she has celiac or at the very least gluten intolerance. She has missed a lot of school this year. They have her on home bound right now. I hope the new medicine will help her. It's just so weird how all of this just came out of the blue. She was always a hyperactive (ADHD) child and then suddenly she is so sick and always tired. I'm really worried because she is always sick. I hope this new doctor helps her.

Thanks,

Claudia

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Untreated diabetes can also cause gastroperesis as diabetes damages nerves too.

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Claudia,

If you've been gluten free since October, then it is likely that your celiac panel will come back negative. Make sure your new doctor knows that she was gluten free before the testing. Also make sure he knows that the vomitting has reduced since going gluten free . . . but was this the same time that she started her medication?

We didn't talk about a special diet for the gastroparesis - maybe because it wasn't really affecting her appetite/growth. All the info I had, I found on line so you have probably found the same info . . . low fiber, more small meals instead of fewer big ones.

One of the things the doc did tell me is that recovering from gastroparesis is a two steps forward, one step back kind of process. You can be going along just fine but then any kind of illness can set you back (or hold you stagnant for a while). That and the symptoms are damaging in themselves so even if she's still having symptoms but the intervals are farther and farther apart, you may be making progress (healing).

Good luck to you and your daughter. I hope your new doc finds some answers for you.

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Janet,

We did tell her doctor about her being gluten free and he still wanted to do the blood test. We also told him that she was feeling somewhat better eating gluten free and he said to continue it, but also keep her off dairy since she is lactose intolerant since this all started. She is not on the new medication yet, we have to order it from Canada. All of her other medications she has been on we found out they had lactose in them and she discontinued them. Right now she is on Protonix for acid reflux, but he is putting her on Domperidone. He said that her lactose intolerance can also cause all of her symptoms. We first noticed things happening to her this past summer. It started with her getting sick on ice cream. Then when she started getting sicker in Aug. The doctors were giving her different medications for GERD. None of the medications were working. She just seemed to get sicker. One of my day care parents mentioned celicac and told me to look it up. She has so many symptoms that I decided to take her off of it. When I mentioned it to her old gastro doctor he told me she couldn't have celiac because she hadn't lost a lot of weight. But when I took her off gluten in Oct. her weight stabilized at a 10 lb. weight loss and her vomiting wasn't nearly as bad. It comes and goes. I had read about gastroparesis on here and it fit her to a tee. When I took her to the new doctor he too suspected it and read it on her records from the previous doctor. He couldn't believe the other doctor hadn't done anything about it or hadn't checked her for celiac. He said she has all the symptoms, she should be tested. So that's where we are right now. Gastroparesis was positive. Still no word on the celiac panel. But with her gluten free it won't be positive unless she is still getting glutened somehow. Thanks for your help. I am so glad I found this forum. It has helped us so much to get so much help from all of you.

Thanks,

Claudia

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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