Please Help!

[flaca247]

My mom was diagnosed with celiac in December by blood panel. Dr. did not do a biopsy - the GI said they didn't need to see her, she just needs to go on a gluten free diet. She has been gluten free for three weeks now and her symptoms are worse - she used to have abdominal pain and swelling after eating, but worse with meat and diary. Now she has pain all the time, and is worse when she eats. She says pain is worse than it was before. She wrote her doctor who said that since she still has stomach pain on the diet, she doesn't have celiac because the blood tests aren't 100%. He told her to get off the doet and if she still has pain in a few months, to make an appointment with him.

My problem is that he didn't do the biopsy in the first place, and diagnosed her with celiac. He also didn't explain why her pain was WORSE. She has been having abdominal and neurological issues for well over a decade.

Has anyone had worsening symptoms after going on the diet? She decribes the pain as feeling like someone is running a knife across her intestines.

[CeliacMom2008]

1 - your mom has not been on the diet long enough to know. She is still in the learning curve and may be accidently getting gluten. If she's been sick for decades could take her a year to heal. A battle has been raging in her intestines a few weeks is not enough time.

2 - I do believe I have read posts from people who felt worse for a little while, but I don't have any personal experience.

3 - get a new gastro! One that will actually see her right now. She shouldn't have to live with pain and although I'm not a doctor it seems like he should've come up with some better answers than what he has.

4 - Although the biopsy is the gold standard, the blood test is pretty darn reliable for positive tests. It does have some false negatives, but I don't think it has many false positives.

5 - She may be lactose intolerant for awhile until her gut heals. That may be the cause of her pain right now.

Take care of her!! You're a great daughter to be out researching it and asking questions!

[climbmtwhitney]

My mom was diagnosed with celiac in December by blood panel. Dr. did not do a biopsy - the GI said they didn't need to see her, she just needs to go on a gluten free diet. She has been gluten free for three weeks now and her symptoms are worse - she used to have abdominal pain and swelling after eating, but worse with meat and diary. Now she has pain all the time, and is worse when she eats. She says pain is worse than it was before. She wrote her doctor who said that since she still has stomach pain on the diet, she doesn't have celiac because the blood tests aren't 100%. He told her to get off the doet and if she still has pain in a few months, to make an appointment with him.

My problem is that he didn't do the biopsy in the first place, and diagnosed her with celiac. He also didn't explain why her pain was WORSE. She has been having abdominal and neurological issues for well over a decade.

Has anyone had worsening symptoms after going on the diet? She decribes the pain as feeling like someone is running a knife across her intestines.

Hi.

CelicMom2008 gave great advice. I just wanted to add that both my daughter and I got worse before we got better. After initially going gluten-free we felt wonderful--but only for about 5 or 6 days. Then we felt awful. My doctor said we were going through die-off of immune cells. My daughter (10) took about a week to feel good again, but I took a full 6 weeks. I felt like I had a bad case of the flu. My nutritionist recommended taking charcoal caps from Whole Foods to help eliminate the dead cells. We did. I'm not sure if it helped or not though. I would advise your mom to stick with it and see what happens. We never had "stabbing" stomach/intestinal pain from gluten but everyone's symptoms are very different.

It's also possible she has developed other food intolerances from her damaged system (leaky gut). I was shocked to learn we also couldn't tolerate milk casein (all dairy products) and soy. There are lots of folks here who have multiple food intolerances. I think casein, corn, and soy are some of the biggies. Your mom may want to keep a food journal--keeping in mind that some reactions will be the next day or even longer.

Also, since she is new on the diet, I second the thought that perhaps she is still getting gluten somewhere. The learning curve is rather steep. It's very frustrating when you think you've been gluten free and then you find out that you've made a mistake. VERY frustrating! Make sure she checks her vitamins/supplements/medications. Even something simple like Mentos has gluten.

One more thing--many (including us) have become hyper sensitive to the smallest amount of gluten since going gluten free. So cross-contamination is something to watch out for.

I wish your mom well. Hopefully, she'll figure out what's bothering her soon. It's so very hard seeing your loved ones suffer, huh?

Best,

Jill

P.S. Soy gives me "stabbing" stomach/intestinal pain. Just a thought.

[flaca247]

Yes, Jil, it is hard to see her suffer. Frustrating for her to have problems for so long and no answer from the docs. Thanks so much for the input. I have one more question - does anyone know if the gluten free diet is bad for someone, I mean can it cause problems if you're not celiac?

[ravenwoodglass]

Yes, Jil, it is hard to see her suffer. Frustrating for her to have problems for so long and no answer from the docs. Thanks so much for the input. I have one more question - does anyone know if the gluten free diet is bad for someone, I mean can it cause problems if you're not celiac?

The gluten free diet is a very healthy diet even for those who don't need to be gluten free. It will not cause problems. I do agree with the others that she should not abandon the diet for the reasons they have stated. One thing that wasn't mentioned was the withdrawl that some of us experience. It is not unusual to feel worse for a bit before you feel better. There is a lot more to the diet than just food, you need to make sure she is not being cross contaminated by things like using the same condiments as others who are eating gluten, the need for a new toaster, the need for caution or to avoid baking gluten foods, the need to avoid foods that have a high risk of CC in the processing. Things like Lay's snack foods are a prime example and she should avoid eating foods processed in the same plant as gluten foods until she is fully healed. If she can eat 'pure foods' for a while that will help speed the healing. Go for unprocessed meats, veggies and fruits, plain rice and potatoes. That is often quite helpful. She should not try to sub specialty gluten free products too quickly.

Newer research is showing that the biopsy is not always needed for diagnosis. The newer blood tests are much more reliable and while there is a chance of a false negative when the test is positive it is pretty conclusive. The biopsy itself has a high rate of false negatives also and I think your doctor made a good choice when he diagnosed her based on blood work and symptoms.

Please hang in there and make sure that you get tested also. It is strongly genetic.

[RiceGuy]

Speaking from experience, my suggestion would be to try certain supplements. Deficiencies of B12 and magnesium are well-known to cause pains of various sorts. Plus, Celiac's are often deficient in these nutrients too. I'd make sure the B12 is a sublingual methylcobalamin type.

I hope you get it sorted out soon!

[CeliacMom2008]

Another thing I thought of...the ingredients in gluten free foods can take some getting used to sometimes. For example: Garbanzo bean (also called chickpea flour) can cause gas (OK, all the bean flours can do this). Flax is a natural laxative (but very healthy, you just have to ease into it). Something in my PB cookies gives my mild heartburn (doesn't stop me from eating them though!). Etc. So she might want to watch or avoid some of the gluten free substitutes (breads, cookies, cakes, etc.) until her tummy heals a bit more - at least eat them in moderation.

As for the gluten free diet if you don't have Celiac...it's perfectly fine. You just have to make sure you're getting enough fiber/whole grains and make sure you're eating healthy (but that goes for any and all diets!).

Good luck!

[ang1e0251]

I am going to reinforce all the good advice that you have been given. I would see that she goes off dairy and probably fruits immediately. That at least will give her raw and damaged system a chance to calm down. The advice for simple whole foods is the best. When you have years of damage, you just can't heal overnight. A positive bloodtest is conclusive in what I have read.

Is she in a household where there is still gluten present? CC is a very strong possiblity. Make her tea and broth and ease her poor stomach back to health.

Keep us posted as we will be thinking of you and your mom.

[Takala]

Yes, Jil, it is hard to see her suffer. Frustrating for her to have problems for so long and no answer from the docs. Thanks so much for the input. I have one more question - does anyone know if the gluten free diet is bad for someone, I mean can it cause problems if you're not celiac?

No, a gluten free diet won't cause problems if the person isn't celiac. Many households go completely gluten free just to make life easier avoiding cross contamination for the ones who do have to avoid gluten, and they don't have any problems adapting to the diet as long as the quantities of whatever they are consuming match their metabolic needs. My husband, for example, eats the same meals I do every evening and then frequently on weekends he might not eat gluten at all. The only thing I have to be careful of is to make him eat a snack before we do any outdoor activities away from home, because I am the type to do better on higher protein and fat and lower carbohydrate diet, I don't get starving hungry crash and burn now, and he needs more carbohydrates before exercising. I learned the hard way I can go a lot longer without eating carbohydrates than a normal person as long as I stay hydrated with water.

We both eat lots of fruit and vegetables, lean meats, olive oil, avocados, eggs, nuts, some hard cheese for me, yogurt for him. Carbs are rice, such as rice pasta, rice crackers or gluten free rice cakes, corn tortillas, homemade gluten free bread with almond and sorghum, amaranth meal, beans, potatoes.

He drinks milk, I won't go near it. Instead I use nut milks such as hemp or almond, and coconut milk to put in tea or coffee, and to bake with, because I avoid lactose. I am now not completely soy free but I cut back my soy consumption to only that found in mayonnaise, and I cut back on how much gluten-free soy tamari sauce I use.

I think where a lot of people screw up initially is that they just go and substitute the commercially made gluten free products for the regular ones they were eating, and that they don't know that they have additional food sensitivities that need to be figured out. I initially was grainless for a long time, also avoiding dairy, and eating a modified SCD (specific carbohydrate diet). Now sometimes I will pick up a commercial gluten free product in the store, read the label, think "you have got to be kidding, no way" and put it back on the shelf because it has something in it I don't want.

This could well be what is happening with your mother right now. It is best to start with an extremely simple diet and see how it is tolerated, and then other things can be added in slowly.

The other thing that happens is that people will accidently keep cross contaminating themselves because they don't know which items to avoid, and they buy something at the grocery that is not really gluten free but they think it's safe, and it is not. How about lipstick ? I about had a cow when I first came on here and discovered that even some brands of lipstick could have gluten in it.

Hopefully someone has told your mother that she will need to be taking gluten free calcium, magnesium (to balance out the calcium) and a B complex vitamin supplements to address the malabsorbtion issues.