Update On Jessica... Mushroom Can You Or Anyone Else Help

[Loobiej]

Hi ALL

I am just updating on how things are going with Jessica. So far we have had blood tests that came back negative, Jessica had a few rough weeks early this month and she was very sick in school and we noticed slight streaks of blood in her stools, and when she wiped. I spoke with consultant and he wanted her to have an xray, when she has a bad week her excezma flares up she gets very sore around her lips and ulcers. The dr wanted to check they were no blockage etc and the result showed everything was ok. She had slight blood streaks in her stools again last week but we are putting this down to her going to the toilet alot and her stools been very loose. The next step after the blood test result been negative was to try a wheat/gluten free diet so we were referred to a dietitian, thankfully we got a cancellation and saw the dietician last week she suggested a wheat free diet first rather than going straight onto gluten free, so we are doing this for about 10 weeks, my concern is looking at most things in supermarkets if there wheat free most of them are gluten free? ie:most bread to make her a sandwich, i phoned the dietician yesterday and explained this and said i was slightly confused as shes going to be wheat free but also much lower gluten intake she said that she will still have an intake of gluten as it is in alot other foods,we only started the diet on monday and the amount shes going to the toilet has reduced to less than half, im not sure if this can happen so quickly, her other symptons such as mood swings and sore lips havent settled infact theyve probably increased. The dietician has told me the consultant will probably put her back on wheat and gluten before carrying any further tests but he wants to see how she reacts to diet first, my concern is shes more a less wheat and gluten free or has a much lower gluten intake how am i going to tell whats maybe causing the problem? any help is much appreciated. Thank you x

[kareng]

Sounds a little screwy. Trying a gluten-free diet to see if it helps is a good thought. I have found that wheat free is almost gluten-free. Rice Krispies and some candy are a few things that are wheat free but not gluten free (barley malt). I think I would try to eliminate all the gluten since you probably are anyway. I think your dietician might be confused on what is really in food.

[Loobiej]

Hi

Thank you for your reply. Im just annoyed i was hoping they could have done the endoscopy while she was glutened rather than taking her off it now and then putting her back on to it. My mum is celiac and she can tolerate a certain amount of oats.

How should i expect her to be now ive started the gluten free diet, shes again complaining about the pain on her left hand side under rib cage? is this associated with celiac?

From reading online it could just be wheat allergy or gluten intolerance? but the symptons are very similar.

[GFinDC]

I had pain on the left side under the rib cage for years before going gluten-free. So, yes, it can be associated with celiac.

Wheat allergy could cause things like trouble breathing, red eyes, coughing, sneezing and stomach upset etc. Have you tried testing her with barley? If she reacts to barley also it is more likely to be celiac I think.

[Loobiej]

No she doesnt really have symptons like that for wheat allergy, if you look like down this forum i did a post topics - Newbie I need help, is my daughter Celiac, the full story of her symptons are there.

I havent tried her with Barley, when would you do that? We have already started Wheat free / Gluten free diet?

Thanks

[GFinDC]

Hi LoobieJ,

Ok, I read the other thread. So it sounds like the doc is trying to test her by diet? Eliminating wheat first and then maybe eliminating barley or rye next? I suggest talking to him and ask if that is his plan. If the antibody tests were negative then the diet response test is a good way to go.

I kind of think it would be better for her to go completely gluten free, including not eating wheat, rye, barley or oats all at once. Assuming she has celiac that is the best way to get her better fast. If she does improve then you know there is something going on and how to help it. You can always do a challenge test of her ability to eat wheat, or rye or barley after 3 to 6 months to see if she reacts. But meanwhile she will be getting stronger and healthier and that is a good thing.

Now, I am not a doctor and I don't know what her doc's plan is, but it seems to me giving her a good chance to get better right now is the priority. It could be her doc thinks she has a reaction to just wheat or just barley or just rye and wants to determine that first. But while he is playing food detective she is sick. Nothing against the doc, just sometimes they don't think about what is the best way to go from the patients perspective.

So, since she is just starting to do a wheat free diet, I'd suggest talking to her doc before changing anything. But really ask him/her to explain the diet testing process they want to follow.

By the way, have your read about DH (dermatitis herpetiformis)? DH is a rash that some celiacs get when eating gluten. Only celiacs get DH. They test for DH by taking a biopsy of the tissue around the welts. If it is positive then she has celiac, regardless of the blood antibody tests results being negative. There is a separate section of the forum for DH with more info.

Hi Im New And Need Your Help... Is my Daughter Coeliac?

[mushroom]

The way doctors look at things is not necessarily the best way from the standpoint of the patient (although it may be for the insurance company ) I am constantly amazed that doctors will put patients gluten free and THEN suggest they need an endoscopy and biopsy. By that stage if the patient is gluten intolerant they will have done a lot of healing and will have to go back on gluten for two to three months, during which time they usually feel much worse than they did before - in fact many people don't make it much beyond two weeks into a gluten challenge before they abandon it!). So if he is considering referring her for an endoscopy he should do it now from my point of view. Of course, he will say there is no indication for it because her blood work was negative, but for heaven's sake, the child has symptoms!! 20% of negative blood work is a false negative besides. But the insurance company can often put their foot down unless the doctor is more proactive on the patient's behalf

As for a wheat free diet vs. a gluten free diet - you have to look real hard, as you are finding out, to locate things that have rye or barley and no wheat. You can make a barley soup, you can give her things sweetened with barley malt, but rye bread has wheat in it and I really don't see much point in this. We are not talking about a wheat allergy here, we are talking about an autoimmune response, and this is almost assuredly caused by gluten, if AI is what it is. And the gluten is in all three grains. It seems unnecessarily hair-splitting to me, as it is very unlikely she will be able to eat barley but not wheat and vice versa.

I agree with GFinDC, it is important to know what the doctor's plan is, if he has a plan, and how he intends to implement it. If it includes taking your daughter off gluten and then putting her back on for 2-3 months so that a biopsy will be valid, I don't think it is a good plan. We both know that to biopsy somebody who has been gluten free is not a good or valid plan. If he is willing to give her a celiac diagnosis if she responds well to a gluten free diet, without doing the biopsies, that is the better story. If he will not do this I think it is time to reevaluate the plan.

[Loobiej]

Hi Thank you both for your replies.

The Doctor did want to try her on the diet first to see how she responds, she had bloods done before diet and he said these were negative. He did also say the seal and gold standard diagnosis for celiac was endoscopy but he just wanted to take things a step at a time. I just dont think me and her dad will be able to put her back on gluten if she responds so well to the diet.

When we saw the dietitian she was confused as he had put it down as a wheat/gluten diet, but she said the same its one or the other, and to try wheat first but we are just finding it really hard and so far this week shes been just gluten and wheat free apart from a small amount of gluten in her ricekrispies,I have called the consultant and left him a message to call me back, the dietician also said she was going to email him, so will see what his response is.

I must say aswell that my mum has celiac disease and her grandfather had it so we do have family history.

I just want her to feel better and is it normal so early into the diet for us to notice changes particular is her bowel movement ie on sunday she was on a normal diet and went 5 times, on gluten free diet shes now going 2/3 times its a big difference all ready.

[GFinDC]

She could respond within a few days. That is not unheard of at all. Some people take much longer than that also. It varies a lot.

[Loobiej]

Ok so we are 2 weeks into the wheat free / gluten free diet and after the first few days we noticed Jessica toilet visits reduced from going 4+ times a day to 2, we have also noticed her mouth rash has cleared up and so has her rash on the back of her neck, shes still had a few up and down days but its still early days on the diet, we did have a slight error where Jessica made herself some weetabix after the first week of been wheat and gluten free and the day after she went 5 times before 12 midday.

So im guessing this was a reaction to the weetabix!

I have noticed the last 3 days her toilet visits have increased again to 3, and shes a loss in appetite and not eating full meals, im not sure why this is.

The only thing Jessica is having with gluten in is her cereals ie:coco snaps now coeliac society tell me these are suitable for people with coeliac and they only have a certain amount of gluten in, the only reason why Jessica is having these is because they are wheat free cereals, but do contain barley.

Im wondering if this is what could be causing the additional toilet visits is it best for me to just take her off these cereals and see what difference it makes, on one of her days we also noticed extra toilet visits when she had a glass of milk.

Today she had gluten free meal for tea and within 45 minutes she was in the toilet and shes also had a blood in her stools.

Im still waiting for the consultant to come back to me on what is plan in, so have just continued with the wheat free diet but it more aless gluten free too apart from breakfast, i do think the diet as helped already, i think its still early days but it does worry me thats shes still having regular toilet visits. we also have a problem with bread we have tried Juvela and she doesnt like it, anyone recommend any she may like?

Thanks for listening x

[mushroom]

If no one is getting back to you on your questions, if I were you I would take her totally gluten free, ditch the cereals and the barley, and also ditch the milk, cream, ice cream, anything with lactose (milk sugar) in it. There are substitute milks like almond, hemp, rice (I would not recommend soy to start with as this is an additional possible allergen) and see how she does. The recommendation on the milk is based on her probably lacking the necessary enzyme to digest it due to damage from the gluten in her small intestine. This is usually only temporary until she heals. If removing the wheat has made a significant difference but not enough, then that is the next step. Also, it happens quite often after the first week or two off gluten that there is a return of symptoms for a while - we really don't know why. But if you are continuing to give her barley you are continuing to activate the autoimmune response in her body (IMO) and she will probably not get better until you remove it. You do not need your doctor's permission to do this and it would make a lot of sense. As I said earlier, this is not an allergy we are talking about but an autoimmune condition, and the autoimmunity is caused by the gluten in the wheat and, by extension, the gluten in the barley.

I don't know where you live so can't make any recommendations on bread. Never heard of Juvela, sorry.

[Jestgar]

If no one is getting back to you on your questions, if I were you I would take her totally gluten free, ditch the cereals and the barley, and also ditch the milk, cream, ice cream, anything with lactose (milk sugar) in it.

I absolutely agree with this. Get her completely healthy before you start trying other foods.

[Loobiej]

Hi All

We seem to have made progress, i will start a new post soon. xx