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Need Help! ... It Seems Like Its Me Vs. My Doctor

celiaco

By celiaco
in Coping with Celiac Disease

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celiaco Newbie
celiaco
Posted

Before I realized that I was Gluten Intolerant 18 months ago, I had spent a fortune on Doctors as I thought that I was literally dying. My stomach was bloated all the time, my energy level was very bad, my joints hurt, my eyes were foggy, my eyes would water all the time, I even smelled different. When I stopped eating gluten 18 months ago it took 1 week for me to start feeling some relief, after 3 weeks I was feeling like "a kid" and it remained that way until 7 weeks ago. But it is important to tell you that I never had any blood test done in order to oficially state that I was gluten intolerant.

Two out of my three kids, age 6 and 4, were having some growth issues, they were not growing at the pace of the average children even though my wife and I are average size. They were diagnosed with Renal Tubular Acidosis, which is a disease that occurs when the kidneys fail to excrete acids into the urine, abnormal growth is one of their symptoms. As I am convinced that I am gluten intolerant and knowing that it might be hereditary and that one of the symptoms on children is problems with growth I told the doctor that they should be tested. He first asked me to test my self in order to have a resonable reason to test the children. After been in a gluten-free diet for 18 months he said to eat gluten 15 days before testing my blood, but after verifying it with celiac.com

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rosetapper23 Explorer
rosetapper23
Posted

Is there a way that you can change doctors? You should NOT have to go through a worthless endoscopy to prove that you can't tolerate gluten. It's a shame that you've had to harm your health by adding gluten back into your diet. The fact that your children have growth issues is reason enough (in my book) to do further testing. Shame on their doctor!! Please, if possible, change doctors ASAP.

mushroom Proficient
mushroom
Posted

How were your children diagnosed, and what treatment is your doctor providing for this condition?

Marlie Apprentice
Marlie
Posted

How were your children diagnosed, and what treatment is your doctor providing for this condition?

First of all children can have Celiac Disease and not have parents who are. So whether or not you have Celiac disease is immaterial. From what I've read there are false negatives both on the labs and even the biopsys. My child who was just diagnosed only tested positive on the DgP test. Had my child turned up negative on the biopsy I was going to do a trial Gluten Free Diet as I had nothing to lose. In the end she was diagnosed and she is feeling better after 6 days gluten free. Individuals also can get sick from Gluten yet not have Celiac Disease. Best wishes.

ravenwoodglass Mentor
ravenwoodglass
Posted

I am so sorry you are going through this. I don't know why doctors feel we have to prove the diet is helping by making us as sick or sicker than we were when we started it. False negatives on testing are not uncommon even having never been gluten free and even close to death. (Raising both arms and waving strongly here :lol:) My doctors refused to even consider doing an endo since I show up false negative in blood work.

You do have the option of simply putting them on the diet. You don't need the doctors permission. If it helps their growth, and if they need to be on the diet you may see a surprising result in their charts on the next visit, when the doctor says 'well I guess they just needed to 'catch up' you can reply "No they have been on the gluten free diet for x months". I would give anything to have known about the diet and been able to put my son on it with or without a doctors 'permission'.

domesticactivist Collaborator
domesticactivist
Posted

Is there any way you can see another dr who is known to pay more attention to your actual experience than just labs? Could you get the testing done for your kids anyway?

Another thought is maybe it'll make sense to just do the diet without tests. My sense is that regardless what the labs say you'd want to try it with your kids.

beefree11 Newbie
beefree11
Posted

Before I realized that I was Gluten Intolerant 18 months ago, I had spent a fortune on Doctors as I thought that I was literally dying. My stomach was bloated all the time, my energy level was very bad, my joints hurt, my eyes were foggy, my eyes would water all the time, I even smelled different. When I stopped eating gluten 18 months ago it took 1 week for me to start feeling some relief, after 3 weeks I was feeling like "a kid" and it remained that way until 7 weeks ago. But it is important to tell you that I never had any blood test done in order to oficially state that I was gluten intolerant.

I will tell the doctor to make an endoscopy and duodenal biopsy to continue trying to prove that I am gluten intolerant in order to have reasonable doubt about my kids having the same thing in order to help them with their growth issues.

I have read it posted - here, in fact - that the biopsy isn't 100%. You could still have gluten issues with a negative biopsy. Please read the information from this site: https://www.celiac.com/articles/978/1/So-Why-Do-Celiacs-Still-Need-Biopsy-By-William-Dickey-PhD-MD-FACG/Page1.html I hope it helps.

Would you mind so much the endoscopy if perhaps something else could be the cause of your issues? I am very sympathetic. I was found to have a small duodenal ulcer and told to eat fatty. YES a doctor advised me to drink whole milk products to coat the stomach. I was on the floor in pain...come to find out I had gallstones and the fat was killing me! Even after that, my issues became worse. Diarrhea was daily. The endo and colo scopes found some inflammation. Some healing of reflux and a few others, but no villous blunting, I believe was medical jargon was in my report--no blunting.

I am on enzymes, probiotics, organic food and learning to remain calm! Well, at least trying to. But perhaps the scope might be the test you need to find what is going on. If there is inflammation, there may be a problem that your doctor cannot ignore and you may continue the gluten free diet. He can't stop you. Good luck and I hope it all turns out well for you.

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kayo Explorer
kayo
Posted

Is there a reason you wouldn't just put your children on a gluten free diet? Forget the tests and the docs and just go ahead with the diet changes and see if they improve?

My test results are inconclusive because I was gluten-free at the time of testing but doc feels I have celiac as I have all the symptoms. Those symptoms go away when I'm gluten-free. That's all the proof I need. My sister does have celiac and her blood work came back negative and her endoscopy came back positive.

eatmeat4good Enthusiast
eatmeat4good
Posted

Gluten Intolerance is not something that shows up on tests, yet it can be every bit as debilitating as Celiac in terms of health symptoms and poor quality of life.

Just go gluten free and take your children with you.

Leave your Dr. in his office.

He isn't helping.

Find another Dr. and have the vitamin levels of the children checked and yours too.

Then see how it goes on the gluten free diet.

Just a thought

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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